Points of Order
Wednesday 19th July 2017
(6 years, 9 months ago)
Commons ChamberRead Full debate Read Hansard Text
Paul Flynn (Newport West) (Lab)
On a point of order, Mr Speaker. Yesterday’s Order Paper said that the debate on drugs could continue until 7 o’clock. The final speaker sat down four minutes early. The normal practice in this House is then to use that time for other speakers to contribute. It was particularly interesting that the final speaker, the Minister, had denied interventions on the grounds that she did not have enough time to finish. The Standing Orders are not clear on this point. Is it not right that we get some definition of past practice in relation to cases where speakers do not have anything else left to say and other Members can contribute to what would then be a full debate?
Mr Speaker
I am very grateful to the hon. Gentleman for his point of order and for his characteristic courtesy in giving me advance notice somewhat earlier of his intention to raise it. I am loth to quibble with the hon. Gentleman, who is a considerable authority on matters parliamentary, as evidence by the well-thumbed tome on how to be a Back Bencher of which he is the distinguished author. That said, I am inclined slightly to quibble with him on his proposition that it is normal or commonplace, if a ministerial wind-up concludes early, for other Members to be invited to contribute. In my experience, that is not commonplace. I would not say that it never happens, because you can almost always find an example of something if you try hard enough, but certainly when I am in the Chair I tend to work on the assumption that the ministerial wind-up is indeed the conclusion of the debate.
I note what the hon. Gentleman says about the conclusion of this debate taking place earlier than listed on the Order Paper, although I am sure that he will readily accept that the Official Report—that is to say, the verbatim account of what was said; there is no question of misleading anybody—will show that the debate concluded a little early. The Chair does not normally allow a further Back-Bench speech, and—this is not directed at the hon. Gentleman; it is just a wider point—certainly not from a Member who had already made a substantial speech in the debate.
As for interventions, the hon. Gentleman, as the author of “How To Be An MP”—available in all good bookshops, and of which I am myself a noted admirer, as he knows—he will appreciate that a Member is free to take interventions or not. I note what he tells me—that the Minister said, “No, I can’t take interventions because I haven’t time”—but that is not something on which the Chair can rule. Sometimes Ministers can be a tad neurotic in these circumstances, it is true, as can sometimes, perhaps, shadow Ministers, but that is not a matter for the Chair. Whether the Member seeking to intervene likes it or not, the situation is as I have described.
Let me take this opportunity, in a positive spirit, to encourage all new Members—I am not sure the Whips would agree about this—to read the hon. Gentleman’s books on being a good parliamentarian. [Interruption.] “No!” says a Government Whip, chuntering from a sedentary position, in evident horror at what bad habits new members of the flock might pick up. I think that they are fine tomes. The hon. Gentleman has used his position as a Back-Bench Member to stand up for his constituents and to fight for the principles in which he believes. That has sometimes pleased his party and sometimes not, but that is what we are supposed to get here—Members of Parliament who speak to their principles and their consciences. That is a good thing, and, as he knows, I like to encourage it. In fact, when I was a Back Bencher, I had a relationship with my Whips characterised by trust and understanding—I didn’t trust them and they didn’t understand me.
Meg Hillier (Hackney South and Shoreditch) (Lab/Co-op)
On a point of order, Mr Speaker. Yesterday, the Department of Health accounts were finally laid before the House, after a week of to-ing and fro-ing that prompted no actual changes, as I understand it, to them. The Comptroller and Auditor General has raised some concerns about the accounts. I seek your guidance on two points, Mr Speaker. First, the accounts have again been laid late. Last year, they were laid on the final day on which Parliament sat; this time, they were laid only a couple of days before the final day. Secondly, what can we do to ensure that a Minister turns up to the House to explain the Department of Health accounts and address the financial concerns that many Members of the House, and not least the Public Accounts Committee, have about the Government’s handling of health finances?
Mr Speaker
I am very grateful to the hon. Lady, who has put her concern on the record. It will have been heard by those on the Treasury Bench, and I suspect that the contents of her point of order will wing their way to Health Ministers ere long. The truth of the matter is that there is no resolution of her grievance available from the Chair. The Select Committee on Health may wish to return to this matter if it is dissatisfied, and the Public Accounts Committee, of which the hon. Lady is herself the distinguished Chair, may wish to pursue this matter further. Realistically, I fear that that will have to wait until September, although if the hon. Lady—she is of course a London Member, and a very assiduous attender—is present in her place tomorrow for the summer Adjournment debate and wishes to expatiate further on her concerns, she may well find she is able to catch the eye of the Chair.
If there are no further points of order—I think that there are none—we come now to the presentation of Bills.
Bills presented
Assaults on Emergency Workers (Offences) Bill
Presentation and First Reading (Standing Order No. 57)
Chris Bryant, supported by Holly Lynch, Stephen Crabb, Mr Graham Brady, Ms Harriet Harman, Mr Dominic Grieve, Jo Stevens, Diana Johnson, Tulip Siddiq, Lilian Greenwood, Carolyn Harris and Philip Davies, presented a Bill to make provision about offences when perpetrated against emergency workers, and persons assisting such workers; to make certain offences aggravated when perpetrated against such workers in the exercise of their duty; to require persons suspected of certain assaults against such workers which may pose a health risk to provide intimate samples and to make it an offence, without reasonable excuse, to refuse to provide such samples; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 20 October, and to be printed (Bill 7).
Mental Health Units (Use of Force) Bill
Presentation and First Reading (Standing Order No. 57)
Mr Steve Reed, supported by Norman Lamb, Mr Charles Walker, Jim Shannon, Keith Vaz, Sarah Jones, Mr David Lammy, Dr Rosena Allin-Khan, Marsha De Cordova, Caroline Lucas, Clive Lewis and Heidi Allen, presented a Bill to make provision about the oversight and management of the appropriate use of force in relation to people in mental health units and similar institutions; to make provision about the use of body cameras by police officers in the course of duties in relation to people in mental health units; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 3 November, and to be printed (Bill 8).
Parliamentary Constituencies (Amendment) Bill
Presentation and First Reading (Standing Order No. 57)
Afzal Khan, supported by Joanna Cherry, Hannah Bardell, Mr Alistair Carmichael, Liz Saville Roberts, Lady Hermon and Caroline Lucas, presented a Bill to amend the Parliamentary Constituencies Act 1986 to make provision about the number and size of parliamentary constituencies in the United Kingdom; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 1 December, and to be printed (Bill 9).
Homes (Fitness for Human Habitation and Liability for Housing Standards) Bill
Presentation and First Reading (Standing Order No. 57)
Ms Karen Buck, supported by Luciana Berger, Jess Phillips, Matthew Pennycook, Shabana Mahmood, Heidi Allen, Marsha De Cordova, Andy Slaughter, Alex Sobel, Kate Green, Diana Johnson and Clive Efford, presented a Bill to amend the Landlord and Tenant Act 1985 to require that residential rented accommodation is provided and maintained in a state of fitness for human habitation; to amend the Building Act 1984 to make provision about the liability for works on residential accommodation that do not comply with Building Regulations; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 19 January 2018, and to be printed (Bill 10).
Mr Speaker
Friday 19 January is a splendid day—it is my birthday.
Civil Partnerships, Marriages and Deaths (Registration Etc.) Bill
Presentation and First Reading (Standing Order No. 57)
Tim Loughton, supported by Mr Graham Brady, Dame Caroline Spelman, Mrs Anne Main, Frank Field, Heidi Allen, Caroline Lucas and Antoinette Sandbach, presented a Bill to provide that opposite sex couples may enter a civil partnership; to make provision about the registration of the names of the mother of each party to a marriage or civil partnership; to make provision about the registration of stillborn deaths; to give coroners the power to investigate stillborn deaths; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 2 February 2018, and to be printed (Bill 11).
Organ Donation (Deemed Consent) Bill
Presentation and First Reading (Standing Order No. 57)
Mr Geoffrey Robinson, supported by Paul Flynn, Sir Vince Cable, Caroline Lucas, Michael Fabricant, Liz Saville Roberts, Dr Philippa Whitford, Kate Green, Sir Oliver Letwin, Jim Shannon, Angela Rayner and Crispin Blunt, presented a Bill to enable persons in England to withhold consent for organ donation and transplantation; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 23 February 2018, and to be printed (Bill 12).
Refugees (Family Reunion) (No. 2) Bill
Presentation and First Reading (Standing Order No. 57)
Angus Brendan MacNeil, supported by Stephen Twigg, Robert Neill, Stuart C. McDonald, Tulip Siddiq, Tim Farron, Jim Shannon, Caroline Lucas, Anna Soubry, Ian Blackford, Stella Creasy and Hywel Williams, presented a Bill to make provision for leave to enter or remain in the United Kingdom to be granted to the family members of refugees and of people granted humanitarian protection; to provide for legal aid to be made available for such family reunion cases; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 16 March 2018, and to be printed (Bill 13).
Parental Bereavement (Leave and Pay) Bill
Presentation and First Reading (Standing Order No. 57)
Kevin Hollinrake, supported by Will Quince, Sir Nicholas Soames, Craig Tracey, Carolyn Harris, Antoinette Sandbach, Jeremy Quin, Huw Merriman, Victoria Prentis, Diana Johnson and Rebecca Pow, presented a Bill to make provision about leave and pay for employees whose children have died.
Bill read the First time; to be read a Second time on Friday 20 October, and to be printed (Bill 14).
Representation of the People (Young People’s Enfranchisement and Education) Bill
Presentation and First Reading (Standing Order No. 57)
Vicky Foxcroft, on behalf of Jim McMahon, supported by Jeremy Corbyn, Tom Watson, Peter Kyle, Diana Johnson, Lucy Powell, Sir Peter Bottomley, Stephen Gethins, Jo Swinson, Jonathan Edwards and Caroline Lucas, presented a Bill to reduce the voting age to 16 in parliamentary and other elections; to make provision about young people’s education in citizenship and the constitution; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 3 November, and to be printed (Bill 15).
Overseas Electors Bill
Presentation and First Reading (Standing Order No. 57)
Glyn Davies presented a Bill to make provision extending the basis on which British citizens outside the UK qualify to participate in parliamentary elections; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 23 February 2018, and to be printed (Bill 16).
Parking (Code of Practice) Bill
Presentation and First Reading (Standing Order No. 57)
Sir Greg Knight, supported by Kevin Brennan, Pete Wishart, Mr Jacob Rees-Mogg, Daniel Zeichner and Graham Jones, presented a Bill to make provision for and in connection with a code of practice containing guidance about the operation and management of private parking facilities; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 2 February 2018, and to be printed (Bill 17).
Mr Speaker
I think the nation should be aware that, perhaps because the right hon. Gentleman’s Bill relates to parking, he is sporting a notably colourful tie, which features a very large number of cars. Knowing his penchant, I assume that they are classic cars.
Sir Greg Knight (East Yorkshire) (Con)
They are, indeed.
Unpaid Trial Work Periods (Prohibition) Bill
Presentation and First Reading (Standing Order No. 57)
Stewart Malcolm McDonald, supported by Ian Murray, Lady Hermon, Caroline Lucas, Christine Jardine, Patricia Gibson, David Linden, Alison Thewliss, Chris Stephens, Patrick Grady, Carol Monaghan and Martin Whitfield, presented a Bill to prohibit unpaid trial work periods in certain circumstances; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 16 March 2018, and to be printed (Bill 18).
Prisons (Interference with Wireless Telegraphy) Bill
Presentation and First Reading (Standing Order No. 57)
Esther McVey, supported by Andrew Selous, David T. C. Davies, Kirstene Hair, Trudy Harrison, Philip Davies, Mr Jacob Rees-Mogg, Mr Christopher Chope, Paul Farrelly, Mr Kevan Jones, Mr Stephen Hepburn and Sir Edward Davey, presented a Bill to make provision about interference with wireless telegraphy in prisons and similar institutions.
Bill read the First time; to be read a Second time on Friday 1 December, and to be printed (Bill 19).
Stalking Protection Bill
Presentation and First Reading (Standing Order No. 57)
Dr Sarah Wollaston, supported by Mrs Cheryl Gillan, Ms Harriet Harman, Alex Chalk, Antoinette Sandbach, Luciana Berger, Richard Graham, Victoria Prentis, Maria Caulfield, Mims Davies, Jess Phillips and Vicky Ford, presented a Bill to make provision for protecting persons from risks associated with stalking; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 19 January 2018, and to be printed (Bill 20).
Mr Speaker
Friday 19 January—I do hope I am here.
Employment and Workers’ Rights Bill
Presentation and First Reading (Standing Order No. 57)
Stephanie Peacock, supported by Louise Haigh, Rachel Reeves, Dan Jarvis, Ellie Reeves, Clive Lewis, Lisa Nandy, Jo Stevens, Ian Mearns, Mike Amesbury, Laura Smith and Chris Stephens, presented a Bill to make provision about employment conditions and workers’ rights; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 27 April 2018, and to be printed (Bill 21).
Licensing of Taxis and Private Hire Vehicles (Safeguarding and Road Safety) Bill
Presentation and First Reading (Standing Order No. 57)
Daniel Zeichner presented a Bill to make provision about the exercise of taxi and private hire vehicle licensing functions in relation to persons about whom there are safeguarding or road safety concerns; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 2 February 2018, and to be printed (Bill 22).
Freedom of Information (Extension) Bill
Presentation and First Reading (Standing Order No. 57)
Andy Slaughter, supported by Dan Jarvis, Jo Stevens, David Hanson, Ian C. Lucas, Ruth Cadbury, Christian Matheson, Clive Efford, Stephen Timms, Ms Karen Buck, Louise Haigh and Kate Green, presented a Bill to make providers of social housing, local safeguarding children boards, Electoral Registration Officers, Returning Officers and the Housing Ombudsman public authorities for the purposes of the Freedom of Information Act 2000; to make information held by persons contracting with public authorities subject to the Freedom of Information Act 2000; to extend the powers of the Information Commissioner; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 15 June 2018, and to be printed (Bill 23).
Representation of the People (Young People’s Enfranchisement) Bill
Presentation and First Reading (Standing Order No. 57)
Peter Kyle, supported by Nicky Morgan, Norman Lamb, Sir Peter Bottomley, Rachel Reeves, Ruth Smeeth, Wes Streeting, Anna Turley, Holly Lynch, Conor McGinn, Caroline Lucas and Jim McMahon, presented a Bill to reduce the voting age to 16 in parliamentary and other elections; to make provision for auto-enrolment onto the electoral register for people aged 16 to 24; to make provision about the use of educational establishments as polling stations; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 11 May 2018, and to be printed (Bill 24).
Physician Associates (Regulation) Bill
Presentation and First Reading (Standing Order No. 57)
Anne Marie Morris presented a Bill to make provision for the regulation of physician associates; to make physician associate a protected title; and for connected purposes.
Bill read the First time; to be read a Second time on Friday 26 October 2018, and to be printed (Bill 25).
National Living Wage (Extension to Young People) Bill
Presentation and First Reading (Standing Order No. 57)
Holly Lynch, supported by Chris Bryant, Jo Stevens, Anna Turley, Wes Streeting, Jess Phillips, Tulip Siddiq, Ruth Smeeth, Gareth Snell, Conor McGinn, Naz Shah and Graham Jones, presented a Bill to extend the National Living Wage to people aged 18 to 24.
Bill read the First time; to be read a Second time on Friday 6 July 2018, and to be printed (Bill 26).
Organ Donation (Deemed Consent) Bill
Friday 23rd February 2018
(6 years, 1 month ago)
Commons ChamberRead Full debate Organ Donation (Deemed Consent) Act 2019 Read Hansard Text Read Debate Ministerial Extracts
Mr Geoffrey Robinson (Coventry North West) (Lab)
It is a great pleasure to see the Minister in her place. I was very pleased that yesterday afternoon she put out an official statement of support from the Government. They will be supporting the Bill, not just on Second Reading but through all its stages. That is very welcome and I appreciate that very much.
I am also very pleased with the support—I had no doubts at any stage—of the shadow Minister who will be speaking from the Opposition Front Bench. I must also mention that early on the Prime Minister indicated to me she had a personal interest and lent the Bill her personal support. I would like to say a sincere thank you to the Prime Minister for that. Rounding off this stage of my thanks, I have to mention the Leader of the Opposition. His leadership and support, and that of his office, has been invaluable. I have seldom seen such unanimous support across the House, with the 11 Members who have sponsored the Bill representing seven political parties in this House. Carrying that unanimity and commitment to the country and reaching a consensus there would mean that the Bill can become a very effective Act.
Jonathan Ashworth (Leicester South) (Lab/Co-op)
I pay tribute to my hon. Friend for using this opportunity to bring the Bill to the House. I hope that the House gives its endorsement to the Bill today. I note that the Government have welcomed the Bill. I assure him that if the Government work with him to ensure its speedy passage, they will have the Opposition’s full support.
Mr Robinson
I am grateful for that and thank my hon. Friend very much indeed. His support throughout has been consistent, welcome and a great help. I am pleased to tell the House we also have the support of three previous Prime Ministers. Only Sir John Major felt that he could not support us. He said he did not know enough about it, which was sometimes his problem as Prime Minister.
As I was saying, we should try to carry the unity of the House on this issue to the country and raise public awareness about the need for the opt-out solution we are proposing. That would be a major achievement. The Government have launched a consultation on the matter. My hon. Friend the Member for Barnsley Central (Dan Jarvis), who was with me in the early meetings, urged that course upon the Government. They responded quickly and to great effect: the response has been unprecedented. I am informed, unofficially, that the number of individual responses—separate, individually written letters—is now over 11,000, which is a record for any public consultation of this kind. The consultation does not finish until 6 March. I hope that the campaign will create sufficient awareness for people to find the opportunity to participate in it online via the Government’s website.
The predominantly positive response that we have been led to understand the public consultation is producing is hardly surprising—it is very welcome, but hardly surprising. According to recent reliable polling from the British Heart Foundation, up to 90% of the public said they were in favour of donation in principle, but that only 36% get around to signing the register. I think that many people are guilty, as I was for a number of years, of finding themselves in that position. That in itself suggests how effective an opt-out register could be.
Why are we actively looking towards implementing an opt-out solution at this stage? In England, for example, the situation is disappointing. We have some of the lowest rates of consent for organ donation in western Europe. Low family rates of consent have been one of the major barriers to the donor rate increasing. In effect, that prevents one third of available organs from being used. They go straight to the grave or to the crematorium. None of us likes to think about the worst happening, and it is challenging to have conversations with family and loved ones about one’s wishes after death. However, one of the Bill’s principal aims must be to encourage open discussions among families, so that an individual’s real wishes are known to their nearest and dearest. I think it reasonable to say that in the majority of cases, given the outcome of the consultation and what we know from the polls, people would wish to donate their organs after their death.
However, there will be those who take a different view. Perhaps even one or two in the Chamber feel that way and will make their feelings known in the debate. In no way do I wish them to feel that they have been railroaded into decisions that they do not wish to take. Therefore, I emphasise to those who feel that they cannot lend their support or have doubts about the Bill at this stage that soft opt-out provisions will be built into it. Naturally, I imagine that there will be a fair amount of discussion about those in Committee. I assure hon. Members that, as the Bill’s promoter, I give them my fullest personal commitment to approach discussions about the opt-outs in the spirit of sympathetic open-mindedness.
Theresa Villiers (Chipping Barnet) (Con)
I am here to support the hon. Gentleman’s Bill, but I ask him to engage with the Jewish community to see whether he can allay their concerns about how it might affect observance with their religious teachings.
Mr Robinson
I am very pleased to have taken that intervention. I remember that one of the former Prime Ministers who supports us—Gordon Brown—wanted to introduce an opt-out system, but came up against a fairly immovable block in the then Chief Rabbi, Rabbi Sacks, who said then that at no cost could he commit the Jewish community to supporting it. That rather held matters up and the Government were then overtaken by other matters with that Bill, but yes, we will do that. I have been in touch, and we believe that the council itself has made an official statement supporting the Bill.
Mr Jim Cunningham (Coventry South) (Lab)
I congratulate my hon. Friend on his Bill, and I know that he has put a lot of hard work into securing it. As any Member who has dealt with a Bill in the House of Commons knows, a lot of effort goes on behind the scenes. He has given important assurances on an opt-out, particularly to communities such as the Jewish community, and it is important to convey that message across. I hope we will get further support on that basis.
Mr Robinson
I am grateful to my hon. Friend and my honourable colleague from our shared city—we are both immigrants to it, but we hold it very dear to our heart—and his support along those lines is most welcome. I notice that my right hon. Friend the Leader of the Opposition has come in. I repeat my warm tribute to his leadership on the issue and to the tremendous help that I have received from his office in backing up the Bill. I am deeply grateful. I also took the opportunity to express a sincere thank you to the Prime Minister, who has taken a personal interest and lent her support. I know that he will welcome that, too.
Jeremy Corbyn (Islington North) (Lab)
I apologise for having just arrived, Mr Speaker. I thank my hon. Friend for what he said. It is wonderful that he has got this Bill introduced, and I hope that today the House can pass it and thus save an awful lot of people’s lives in future.
Mr Robinson
That is indeed our aim. However, I shall sound certain notes of caution about what we need to do to ensure that we get and successfully utilise that increase in organ donation. We have to watch out for certain things, and I will mention those as part of the serious approach that my right hon. Friend would expect from me and that, in due course, he would want to see his Government adopt and perhaps have to implement. I hope that that is the case, too.
We have a proud history of innovation in the field of transplantation. I think that time prevents me from going into any detail on that—indeed, I am getting the message from you, Mr Speaker, that time is of no essence, so let me mention a few things that have been achieved. In our proud history, Britain’s first living donor transplant took place on 30 October 1960 at the Royal Infirmary of Edinburgh. The operation was between identical twins, because at the time, the problems of rejection were still a long way from any sort of reliable solution. In November 1965, the first transplant in the UK from a “non-heart beating” donor was carried out, again at the Royal Infirmary of Edinburgh. In 1968, there were the first successful heart and liver transplants. There is a proud tradition, and I am sure that the whole House will join me in congratulating the NHS and all the staff concerned in this department on their magnificent work.
Mark Tami (Alyn and Deeside) (Lab)
I thank my hon. Friend for introducing this Bill. I think that he will move on to the point that transplant surgery is now becoming routine and people are living normal, long lives as a result. When I was growing up, a heart transplant was the No. 1 item on the news, and now they are being carried out every day.
Mr Robinson
Indeed, and the consequence is that to some extent we are victims of our success. We now have a growing need for organs and a growing waiting list for them, as I will mention. That problem must concern us all, and as a country, we must find a proper resolution.
Caroline Flint (Don Valley) (Lab)
I congratulate my hon. Friend on his campaign. There are 90,000 residents in Doncaster who are on the organ donation register, and I am proud to be one of them. However, 54 patients in Doncaster are waiting for transplants. Unfortunately, Andrew Lake, the brother of my constituent, Amie Knott, died waiting for a double lung transplant. Is it not the case that we need to secure more people who are prepared to be part of this service, so that we can save more lives?
Mr Robinson
The whole House will be touched by the constituency case that my right hon. Friend raises, and it will wholly agree with what she says about the need to increase the availability of organs. We believe in a system that everybody is part of unless they choose to opt out. I have made it clear that the opt-out procedure would be simple and that we would respect those who choose to do so. If we can get the Bill through, it will not make an immediate difference tomorrow, but I am sure that over a period of years, as the activity rates and our capacity to handle donations successfully increase, the availability of organs donated will also increase. That is why I am so keen to get the Bill through Second Reading today.
Since those early successes, some 50,000 people in the UK have been given a second chance and a new lease of life, thanks to organ donation. I am sure that the whole House will join me in expressing the gratitude that we all feel to the NHS for that. Even if our history is a proud one, we cannot rest on our laurels. Unaccountably, over the past few years, the steady increase in the rate for donation and transplantation has slowed. In the past four years, to be more precise, it has in effect plateaued in England.
Against that background, there has been growing concern about the fact that a certain amount of inertia is setting in. The most recent figures for the whole United Kingdom make disquieting reading. As of March 2017, 6,388 patients were registered on the active waiting list for a transplant; in the same year, 457 died while on the active waiting list. Perhaps more significantly, over the same period, 857 people died after being removed from the active waiting list because while on it they had become too ill to receive a transplant. That shows how severe the situation is.
Liz McInnes (Heywood and Middleton) (Lab)
I congratulate my hon. Friend on the Bill, which I support. Many of my constituents have contacted me about children who have died for want of a suitable organ donor. I wonder whether my hon. Friend will explain at some point how the Bill will benefit children who need an organ donor.
Mr Robinson
I think that that is one of the most moving aspects. We held a reception last night. Many of those present had benefited from organ donations, but in a number of cases it was their children who had benefited. I will indeed say more about that shortly.
Tony Lloyd (Rochdale) (Lab)
My hon. Friend is making an excellent speech, and I am, of course, here to support him. The sad reality is, however, that behind every organ donation is someone who has died. It is right and proper for there to be facilities for children to receive donated organs, but that means a very sensitive time for the donor’s parents, who have lost a child of their own. How might it be possible to deal sensitively with those families whose children have died?
Mr Robinson
We would encourage that across the board. Although my hon. Friend draws attention to a vital area, it is only one of those that we hope to address. As I am sure he will understand, different issues seem equally important to those who are in other categories. I do not claim that my Bill on its own is a panacea for our problems, but I am convinced that it is a vital prerequisite to the imparting of a new impetus to the increase in organ donations that we know the country urgently needs.
Dame Cheryl Gillan (Chesham and Amersham) (Con)
I congratulate the hon. Gentleman on the Bill, which I support. May I pursue the point made by the hon. Member for Rochdale (Tony Lloyd)? I believe that in 2016-17, after Wales had introduced presumed consent, 13 out of 33 families withdrew that consent when they were asked about it. Can the hon. Gentleman assure me that the Bill will allow room for relatives still to be consulted and to withdraw the consent? After all, it is being asked for at a very sensitive time. I want us to ensure that families are given that latitude, while trying to do everything possible to increase organ donation.
Mr Robinson
The right hon. Lady raises a difficult but important issue. As part of the soft opt-out, there will certainly be arrangements for families and close friends to express their opinions. It is interesting to note that in Spain, which has no register and operates what is effectively an opt-out system, there is always consultation with every family who can be reached in time in the absence of a register, and as a result of those consultations there is a tremendous rate of consent. It can, of course, work the other way as well, and the Bill will make full provision for that. It needs to be carefully worded, and I invite those with a particular interest to look at it, but the intention is to give families in that position an effective veto. I may not have fully picked up the point made by my hon. Friend the Member for Rochdale (Tony Lloyd).
Michelle Donelan (Chippenham) (Con)
I, too, congratulate the hon. Gentleman on the Bill, which I support. Does he agree that the point about Spain highlights the fact that the Bill is not actually the answer, but only part of the solution? After its Bill was passed, Spain took 10 years to increase the rate of donation by investing heavily in transport and infrastructure and a national organ donation system.
Mr Robinson
Yes. I shall refer to some of the circumferential investment that will be necessary to ensure that our own system is successful. Of course we would be starting from a much higher level, because our infrastructure—the nursing provision that is so vital, the body of professional surgeons and the specialist units—is much greater than it was in Spain. However, we recognise the success of the Spanish system. At its heart is the ability to reach the families and talk to them. That should happen in any event, but we believe that when it happens against the backdrop of an opt-out system, it starts from a different position and is—we hope—likely to produce a more positive result.
Sir Roger Gale (North Thanet) (Con)
I think it fair to say that most, if not all, Members who are present today are here because we support the Bill and want to see it on the statute book. But—and it is a “but”—the hon. Gentleman said in his response to the point made by my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) that friends and family would be consulted. I think it important for the Bill to be very precise if the matter is not to be brought into dispute and if a wave of withdrawals is not to be generated, which is the last thing that we want. Will the hon. Gentleman ensure that that issue is very clearly addressed when the Bill goes into Committee, as we hope that it will?
Mr Robinson
I am grateful for the hon. Gentleman’s thoughtful and apposite intervention, and I can give him that assurance. Obviously, as the Bill’s promoter, I shall take a personal interest in ensuring that the right balance is struck. We should bear in mind that the balance will be struck in a context in which opting out is the law of the land, which I think changes the starting point of the discussions with families, but those discussions should nevertheless be handled with proper caution and respect in view of the moments of agony and the awful decision making with which families are faced.
Jo Stevens (Cardiff Central) (Lab)
I am here to support the Bill, but, as a Wales Member, I want to provide some reassurance. Wales already has legislation that has been working and that deals specifically with that point, and we have a higher donation rate than any other nation in the UK. I welcome the Bill, and I hope that everyone present will support it today.
Mr Robinson
I am very grateful for that intervention, in every sense. I was going to come on to the situation in Wales, which has been unfairly and prematurely judged to be a failure—even by as eminent an authority as the Nuffield Council on Bioethics, which yesterday opined on the basis of figures produced only one year into the scheme. However, the latest serious peer-reviewed article in The BMJ expresses a different opinion, some three or four years into the scheme. It was written in February this year, so it is up to date, and there have been a few years in which to observe the trends. According to the author, a respected journalist, Wales has more registered donors and has experienced fewer family refusals and more living donations than any other part of the UK since the introduction of an opt-out system. The article concludes that
“none of the concerns about deemed consent”
—concerns rightly expressed by Members this morning—
“have materialised”.
The signs from Wales are very good, but these are early days, and I think it behoves us to note the caution expressed by the Nuffield Council on Bioethics. We want to proceed carefully and with all the necessary infrastructure in place. One of the great aspects of our present system is that it is trusted by the public, and we cannot and will not put that trust at risk. We must ensure that the new system is introduced properly. What I have seen at first hand of NHS Blood and Transplant suggests that it is a very well organised outfit.
We do have a functioning register; we do know what we are doing; and we are building up our essential counselling nursing capability. As we build it up, some limited investments will also be needed in facilities, for any growth in demand will lead to a growth in the requirement for facilities. I say to the Minister, who is looking rather grim at the moment—[Interruption.] That’s better. I say to her that the NHS is very much in favour of this; I will quote a figure in a moment. Its thoughts as to the extent to which we can benefit in terms of increased numbers of organs and saved lives are encouraging, but it adds that its requirements for additional resources must be met. All I can say to hon. Members in that respect is that the amount of money required—the small requirement of resources in terms of software, mainly for the training of the nurses, and hardware and some facilities—is minuscule in relation to the good it can do. I think of the sheer joy we can see in those, particularly the children, who have had the benefit of a transplant.
Philip Davies (Shipley) (Con)
The hon. Gentleman glossed over Wales in his remarks, but Welsh Assembly Government research showed that the introduction of the opt-out has had no impact on the number of organ donors in Wales, while the organisation CARE has said it has led to a reduction, not an increase, in the number of donors. What learning has the hon. Gentleman taken from the experience in Wales, and what measures are there in his Bill to address some of the flaws there might have been in that system in Wales?
Mr Robinson
That is a very moderate intervention from the hon. Gentleman, for which I am grateful. He is probably looking at the recent remarks and quotes from the Nuffield Council on Bioethics, which relate back a year, if I am not mistaken, to 2016 or ’17, but we are now in 2018 and the situation has evolved. I recommend to him an article I have here in The BMJ; I will leave it out for him if he would like to read it. It gives a full account of the situation in Wales, and is very hopeful. But, as I have said, we are going to monitor this carefully, and we should be cautious, practical and realistic in our approach to the introduction of the system in the UK.
Dame Cheryl Gillan
May I give the hon. Gentleman some good news on Wales? The legislation in Wales was pioneering, and was much discussed when I was Secretary of State for Wales. I have been looking at the details of some of the statistics from Wales in the latest report on organ donation and transplantation activity data, and the hon. Gentleman will be pleased to note that back in 2013-14 some 1,005,213 people were opted into the organ donation register in Wales, while for the first three quarters of the years 2017-18 that number increased to 1,220,331. The fact that more people are opted into that register is very positive news from Wales.
Mr Robinson
It was because the figure was so low in 2013 that the Welsh Government decided to move to an opt-out system. I agree with the right hon. Lady, and disagree with those who, for some reason or another, will not look at the most recent facts and move with the situation that is developing. The situation in 2013 was bad, which the Welsh Government recognised and they then went for an opt-out system. Then there was a period of bedding-in and there appeared to be no change, but the most recent figures for 2018—as opposed to 2017 or ’16—are showing a marked improvement, and I am sure we can all rejoice at that. This is not a matter of trading economic figures across the Chamber; that is a sheer fact and one that I think we can all take great satisfaction from.
Paul Flynn (Newport West) (Lab)
My interest in this matter arose from a constituent—a young man—who came here and lobbied. A year later I attended his funeral because, sadly, he did not get the transplant he wanted, but he had suffered enormously in the preceding period. We have now had the opt-out in Wales, however, and, regardless of what people can do with the statistics, the fact is that people in Wales are still alive who would have died before the law was passed, and people are dying unnecessarily in England.
Mr Robinson
I am grateful to my hon. Friend. It was his Bill that sparked my personal interest, and I pay great tribute to the work he did in preparing that Bill, which we have adopted almost in its entirety. He will be pleased to know that we are hopeful that his Bill—from the beginning, as it were—will now find its way alongside my own on to the statute book; I know that will give him great pleasure. What he says about that individual case is certainly true. The positive news from a cautious assessment from the NHS is that, provided the opt-out system—the quintessential starting point for all these forward projections—is introduced and backed up with the necessary limited revenue and capital spending, up to 500 lives a year could be saved by deemed consent.
Crispin Blunt (Reigate) (Con)
I am delighted to appear as one of the supporters of the hon. Gentleman’s Bill, and am very pleased to have my name on it. I hope he will be able to look at just one thing in Committee: the issue of deemed consent involving people who lose capacity towards the end of their lives. I hope there will be more clarity in Committee to enable people who have made the decision that they want to make their organs available to do so, when just their brain is no longer of much use to anybody else and they do not have the capacity. I hope the Bill will be clear about such circumstances when people lose capacity towards the end of their lives but when the rest of the body can still be of use to others.
Mr Robinson
I thank the hon. Gentleman for his intervention and the fact that he agreed to be a supporter of the Bill—his name appears on the face of the Bill, he will be pleased to note. He raises an area of great concern, but it is something we will have to deal with in Committee; I am sure he will agree that it is not for Second Reading, so I will not go further into it now.
Sandy Martin (Ipswich) (Lab)
I thank my hon. Friend for bringing this Bill to the House, and I will of course support it. He mentions the modest investment in capital and resources needed to give effect to this when it has become law, but does he agree that by saving lives and making people healthy enough to play a full part in society, we will be increasing the ability of our country to succeed, and also—although this is obviously a secondary issue by comparison with the saving of life—we will be reducing the ridiculous amount of spend on just keeping people alive when they actually need organ donations?
Mr Robinson
I entirely agree with my hon. Friend and thank him for his intervention, but I would rather not go down the route of cost-benefit analysis; these are matters of life and death and are best left as such when we look at what we can do to save lives that we know can be saved.
Hilary Benn (Leeds Central) (Lab)
I strongly support my hon. Friend’s Bill. Alongside this measure and a number of the other things he describes, does he agree that the most important thing we can do is have that conversation with our families and loved ones, to make it absolutely clear to them that when we are gone we wish whatever bits of us are still of any use to be given to others so they might continue to live? Is that not what we really need to do to make sure that, when that difficult conversation comes to be had over a loved one who has died on a hospital bed, as many people as possible know and the family can say, “Of course”?
Mr Robinson
I entirely agree with my right hon. Friend. I do not know whether he was in the Chamber when I remarked on the importance of family conversations, which are absolutely vital, and also the importance of public awareness. The Government consultation has contributed enormously to public awareness. We must ourselves now set the example in terms of being registered and not opt out—I certainly have no intention of even considering that.
The other great contribution that we can make in personal terms is to hold those conversations with our own families and encourage others to do so. Public awareness will not necessarily lead to that happening, yet we know that it is at that moment when families are confronted with the awful situation that they often back off, sometimes even overriding the wishes of the deceased who happens to be a registered donor. We can do no more important work than to hold those difficult family conversations and encourage others to do so.
Emma Hardy (Kingston upon Hull West and Hessle) (Lab)
My hon. Friend is making a good point about making people aware of the difference this can make. Yesterday, I found out about the British transplant games, which involve live donors and people who have received an organ transplant. This wonderful event will take place in Birmingham on 2 August. I met a woman called Pat who had been a live donor, and she said that she was going to take part in the games with the person to whom she had donated an organ. I thought that was so wonderful. Obviously, no one wants to think about the worst thing happening to their family or anyone they love, but it would be wonderful to think that anything I could give when I have gone would help someone to live a fulfilling life that could even involve taking part in a sporting event like that. We should think about the future and the real difference that this can make for so many people. I am so proud to be standing here with my hon. Friend on this day and supporting his Bill.
Mr Robinson
I feel inclined to say that I rest my case, but I cannot quite do that just yet. I think I am okay for time, despite all the interventions. I will, however, proceed to a conclusion now, if I may.
I have quoted some disquieting statistics, including the 500 saveable lives—or avoidable deaths because of the unavailability of an organ—a year. To put it another way, if we continue with unchanged policies, some 500 of the 6,500 people on the present waiting list will, in effect, be on a life sentence and will die in the next year if no organ becomes available. I believe that the House will agree that that is simply not good enough. We can do better as a nation. We have shown that we can do that through the creation of the NHS, which is something that no other nation achieved. Here again, we can be pioneers in making transplantation more successful, principally through an increase in organ donation.
As I have said, I do not think that my Bill is the answer to all the questions—we have discussed many of the points that need addressing in the course of this debate—but my God, I am convinced that it is a necessary start if we are to regain the momentum and the impetus that we lost by moving to an opt-out system. After all, that is why this measure has been introduced in Wales, and that is why I am putting my proposal to the House today.
My hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) talked about the British transplant games. Last night’s reception, given by the Daily Mirror—very fortunately—in the Terrace Room, was very moving. I met Max’s mom, as she has come to be known—Mrs Emma Johnson—and she gave us the most up-to-date news on Max, who has become something of the face of the campaign. I make no excuse for being emotional about this, and I am sure that everyone will be delighted to know that Max is still doing well. He went back to school part time last September, and it is hoped that next year he will be back full time. The hon. Member for North Devon (Peter Heaton-Jones) represents the donor family—the Ball family, whose daughter, Keira, was killed in a terrible car crash; a most unfortunate incident—and he brought to my attention something about the Max story that I did not know. Keira gave her heart to give that young boy his life, and Max’s mom, Mrs Johnson, has said how much she is looking forward to meeting the family. She says she wonders how they will feel when they put their hand on Max’s heart and feel their daughter’s heart still beating. I had a call alerting me to the fact that the hon. Gentleman wanted to take part in the debate and to refer to this, and I said that that would be great. I am sure that he will catch your eye in due course, Mr Speaker.
There are many in this House who have been affected in one way or another. If I may, I would like to mention my hon. Friend the Member for Sunderland Central (Julie Elliott), who was also at the reception last night. Her daughter, who unfortunately could not attend, has been on daily dialysis for 12 months now while waiting for a kidney. I know that my hon. Friend will also want to catch your eye if possible, Mr Speaker.
I hope that the party opposite will take it in the best spirit when I say that I would like to thank the Daily Mirror for its magnificent campaign on this issue. It shows just what a free press, fighting courageously, can achieve for a brave cause. It is, in that sense, the best of the best. I said that to their representatives very openly last night in thanking them for the campaign, and I know that they feel that they have achieved something—perhaps more than some newspapers achieve in 24 pages of exposure. The representative of the Daily Mirror told me that my thanks were welcome, but they were nothing compared with the happiness felt at the Mirror every time there was a successful transplant as a result of the campaign, especially among the young.
I have had many letters on this subject, although it is properly not appropriate for me to read from them now, as I was intending to. I shall just say that the House has an opportunity today that, while not unique, might not occur again for several years. We have the opportunity to introduce a Bill whose enactment we could achieve by the end of this year, if it receives its Second Reading today, and whose effect could begin to be felt in the following year. I believe that the House is in the mood to rise to the occasion, and I am sure that we will seize this opportunity to pass a Bill that will come to be regarded as an Act for life.
Dame Cheryl Gillan (Chesham and Amersham) (Con)
Thank you very much for calling me to speak so early in the debate, Mr Speaker. I add my congratulations to the hon. Member for Coventry North West (Mr Robinson) on the compassionate way in which he introduced his Bill, and on bringing it before the House. I hope that I am not assuming too much when I say that I think there is good support for it on both sides of the House. More importantly, I believe that the Under-Secretary of State for Health, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), who will be speaking from the Front Bench today, will also be giving it her support. For me, this is a bit like déjà vu, because I went through all these arguments back in 2010 when the Welsh Assembly was looking at introducing what finally became the Human Transplantation (Wales) Act 2013, which took effect in 2015.
The permitting of a system involving deemed consent is quite a complex concept. To be truthful, it received many objections from a large number of people in Wales at the time, on a large number of grounds. I was approached by the Kidney Wales Federation, which did a fantastic job, along with a lot of other organisations, in lobbying politicians and explaining the position of families who were waiting for organs and families who had been approached to donate the organs of a deceased relative. The debate got quite heated at times, and it also gave rise to a lot of myths. Looking at the evidence, I have always found that the medical profession and others surrounding bereaved relatives, or those who are about to become bereaved, have handled these matters with great sensitivity and achieved good outcomes. Indeed, the legislation in Wales still permits families to withdraw the so-called deemed consent, which means that their views can be taken into consideration. That is extremely important.
One thing I looked at was the success rate of the 2008 organ donation taskforce, which helped to increase donation rates greatly in the five years of its operation. There was a 50% increase in donors and a 30.5% increase in transplants, which are impressive statistics. At the time, I was exceedingly worried that, by introducing controversial legislation, we might do damage to a campaign that was yielding positive results—that needs to be taken into consideration.
The truth is that there are more people on the donation list than there are organs available. For many people in this Chamber, and beyond, it is worth noting that there was a particular problem in the black and minority ethnic population because, in those days, 23% of the people waiting for organ donation were from the BME population and only 1.2% of the people on the register were from the BME community. That huge discrepancy and disparity caused a lot of aggravation.
I was unsure about the legislation in Wales, but I am pleased to stand here as a politician and openly admit that I have changed my mind. There is no disgrace in that—when the facts change, I change my mind, which is important. One reason why I changed my mind is that I have a dear friend who, for the purpose of this debate, I will call Jane. I have known her son since he was born, and I will call him John.
John has primary sclerosing cholangitis, a chronic liver disease whereby the bile ducts, the passages that carry bile from the liver to the intestines, become blocked and narrowed by inflammation, so scar tissue builds up and the liver itself stops functioning. The symptoms can include tiredness, aching, itching, pain in the abdomen, jaundice, chills and fevers. The progression of the disease, although highly variable, usually leads to one conclusion—that the patient needs a liver transplant.
John has been told that, because of the shortage of transplants, he has to be in cirrhosis before he can be put on the list, and then he will have to wait for a match. By that time, he may not be well enough to have a transplant. I am close to the family and have seen the effect on them. Jane wrote to me:
“This has obviously affected the whole family. John still lives with us at 25, and we are, in fact, his carers in some respects, as we know he will only get worse in time. We do not know how much time he has, and he cannot plan for his future. As well as physically, mentally it takes a great toll on him, as he does not know if he will get a transplant when he needs one. Organ donation would help a great deal in this.”
When you have a friend with a boy—he is now a man, and he is a highly intelligent and wonderful human being—in that position, you have to reconsider where you stand on such legislation.
The Bill will not be enough in itself, but it will do absolutely no harm and it will again stimulate a debate. If the Bill continues to be accompanied by campaigns to encourage people to register and to donate, it will help to raise awareness, which will help to increase the statistics, as we did in the first five years following the organ donation taskforce.
We are all living longer, and if we in this House can prolong the life, and improve the quality of life, of people such as John who suffer from rare diseases, we should do so. I will give this Bill a fair wind. Obviously the devil will be in the detail, and we will need to consider the Bill carefully. I would like us to consult, and to learn from the experience in Wales, because there will be a lot to learn—Wales has forged the way.
I do not want a hard system, as in Austria—that is not what I envisage. I want this whole area still to be surrounded by the care and consideration of the medical profession, and I want the latitude that allows families and people with genuine reasons not to participate, but I want to see increased numbers of people on the register. I want to see increased organ donation and more lives saved. I give the Bill a fair wind.
Julie Elliott (Sunderland Central) (Lab)
I congratulate my hon. Friend the Member for Coventry North West (Mr Robinson) on his success in the private Members’ Bills ballot, which is no mean achievement, and on choosing this most important topic. I have always supported an opt-out system, as opposed to an opt-in system. What I will talk about today has not resulted in my decision that an opt-out system is right, but it has amplified the importance of my decision.
I pay tribute to my hon. Friend the Member for Barnsley Central (Dan Jarvis), who has done so much good campaigning on this issue. I also pay tribute to the Daily Mirror, which has already been mentioned, for its campaign, and to the Prime Minister and the Government for their statement this week in support of the campaign—that is very important.
Today I will talk about my family’s story. I rarely talk about my family in public, because it is me, not them, who entered public life. There is nothing special or unusual about my family, and what has happened to us over the past 18 months could happen to anyone. Young or old, rich or poor, there is no differentiation when such things happen, and they highlight the reality of the need to change the law to deemed consent.
I have four grown-up children, all now either married or with long-term partners, and five wonderful grandchildren. We are a very close family, and I am lucky that we all live within two miles of each other in Sunderland—when I am not down here. My eldest daughter, Rebecca, is now 36. She is married and has a six-year-old daughter, and she was referred to the renal unit of the Freeman Hospital in Newcastle after routine blood tests showed a problem with her kidney function. That was in October 2016, so not that long ago.
After Rebecca spent a week or so in hospital, it became clear that she was quite ill with significantly reduced kidney function that could at some point lead to her needing a transplant. That was where we thought we were, which was a big enough shock in itself, but the medical team at the Freeman thought that they could stabilise her condition.
Rebecca had been reasonably okay until that point. She had had a few issues health-wise, but she was okay, so the diagnosis of chronic kidney disease came as a huge shock to her, to me and to our family and friends. To face the reality of the fragility of life is very hard at any time, but facing it for one of my children, although she is an adult, is one of the hardest things I have ever had to do.
My daughter had until recently been a healthy, happy young woman. She was quite a serious runner in her spare time, and she regularly ran half-marathons and, occasionally, marathons. In fact, in the weeks before she took ill in October 2016, she had gained a place at the 2017 London marathon—she did not run it, obviously. It is impossible to describe the shock of someone like that suddenly becoming so ill. I have to say that she did not get her fitness drive from her mother, who goes to watch her run but does not run herself.
Sadly, Rebecca’s condition deteriorated very quickly, and in June 2017 she had surgery to enable her to start dialysis. One of the few positive parts of the general election campaign for me was that I was at home for six weeks, so during the time when her health was deteriorating rapidly I was able to drop everything and get to the hospital quickly. It is a lot harder to do that when I am 300 miles away.
Rebecca started dialysis last July, and I want to talk a little about the daily reality of her life. In the two or three months leading up to her having surgery she became increasingly unwell, to a point where, daily during those last few weeks, she was just lying on the sofa after she got up and she was not eating particularly well, if at all. She had the odd slice of toast or bowl of cereal. One thing that happens when people have kidney failure is that they feel very sick and generally unwell, with no energy. She could not really walk to the end of the street and she certainly could not take part in all the things that her daughter did on a day-to-day basis.
When dialysis was first mentioned to us, it was a terrifying prospect, but its arrival has given Rebecca a quality of life again. She does PD—peritoneal dialysis. She has a machine at home and links on to it every night, and for eight hours her body dialyses on it. That means that she has got some quality of life back. She is back at work, but she does have restrictions. She has to have a restricted diet, which for her means no coffee, chocolate or cheese—three things she loves. She gets two of those from her mother, but I am a tea drinker, not a coffee drinker. She is here and she is alive. Whenever she has a bad day—she does have bad days emotionally, because this is a difficult thing to be dealing with—and she says, “I am sick of this dialysis”, I say, “Just think: what’s the alternative, Rebecca?” That quickly focuses the mind and she picks herself up.
As a family, and with close friends, we have all rallied round to support Rebecca and each other through this challenging time.
Andrea Jenkyns (Morley and Outwood) (Con)
My heart goes out to the hon. Lady for what she has been going through, and I am sure everyone in the House today would say the same. She mentioned dialysis, and I am going to mention a constituent of mine, a very young girl. This Facebook post hits home:
“Today 1,608 days with total kidney failure. Today 19,296 Hours spent on Dialysis. Today waiting for the precious call, a match has been found.”
Does the hon. Lady agree that when we think of such children, and people like her daughter, it is very hard not to support the Bill today?
Julie Elliott
Absolutely. As I have said, this sort of illness strikes indiscriminately, and when we attend appointments—I attend just about every appointment with Rebecca—we see everyone from very young people through to older people; we see people from all walks of life. It is heartbreaking seeing people with this sort of illness. Every one of those people has a family, has a story and has loved ones, and it is very difficult.
I want to talk a little about the impact of this kind of illness on the wider family. As Rebecca’s health rapidly deteriorated, she had to be off work sick quite a lot. She has had some considerable time off sick. Even though she is now back at work, she still gets days when, as happened this week, she is not very well in the middle of the day and has to come home. Dialysis does not mean that someone is fit, well, healthy and leading an absolutely normal life. She has been very lucky, as her employers, True Solicitors of Newcastle, have been an amazing support to her. They have done everything they can to help her. They have done fundraisers for kidney charities—I am thinking particularly of her colleagues Kay and Lindsey. If I am trying to get to the hospital from wherever I am when Rebecca suddenly takes ill, they will take her to hospital from work and sit with her until one of the family can get there. I want to thank them publicly, because many people in this situation are not so lucky and face losing their jobs, with all the hardships and problems that creates. So it is important to say thank you to people who have been fantastic.
Next I want to mention the renal unit at the Freeman Hospital in Newcastle. Not only is that a world-class unit, but it has some of the most amazing and dedicated staff I have ever come across. From the time someone walks through the door at the out-patients unit, the receptionist, Ann, is always smiling, always welcoming and always looking after them, and the same is true of everyone right through to the most senior doctors. We have seen a lot of different doctors as this illness has progressed. The whole team are amazing, particularly the PD nurses who are looking after Rebecca’s dialysis. They look after Rebecca, but they also look after her family and they have got to know us all, because we have all been there with her at different stages. They are the essence of everything that is great about our health service. They are working under enormous pressures on their time and resources, but they always have time for us. I want to say a personal thank you to them.
I know that this is not a political debate as such, but I am a politician, so I hope Members will give me a moment’s licence. I am going to say that I think the health service staff need a pay rise and the NHS needs more investment, because they are such amazing people and they literally make the difference every day between people living and dying.
The impact on our family has been huge. You go through a period of shock, disbelief and anger as to, “Why Rebecca?” More than one doctor has said to us through that period that it should not be happening to her, as she has been a fit, healthy young woman who has done everything right in looking after her health. They cannot find the reason this has happened. The emotions and journey you go through are like a rollercoaster, because we have to deal not just with the direct impact of what is happening medically to Rebecca, but with the emotional impact of seeing that what is happening to her might mean that my daughter might not be there when I am still here. That is not something any parent ever wants to consider. Although all my children are grown up, they are having to deal with seeing their mother coping less than I normally do. I am a fairly strident, coping kind of woman normally. All of them are dealing with the idea that their sister might not be here. That is all very, very difficult. So we have rallied round and all supported each other, and we remain very positive. Rebecca is very lucky that she has a brother and sisters, my sister, her husband and a great mother-in-law, who have all played their role in supporting this journey we are on, and continue to do so.
It is very difficult being on call for a phone call. My phone is with me all the time. It is very difficult working 300 miles away when you are in this situation. As we all know, we sometimes travel out of this country in this job, so whenever I travel out of the country on business with Parliament, I have a plan of how I am going to get back. It is important to thank colleagues in this place, from all parts of the House, who have given me a huge amount of support. The Whips have been fantastic; they have basically said, “Just go. Text us and tell us you’ve gone.” There is a slight personal thing in that as well, because our Deputy Chief Whip, my right hon. Friend the Member for Tynemouth (Mr Campbell), has known Rebecca since she was a child. As many Members will know, I was his agent in 1997 when he got elected to this place, and Rebecca, being my daughter, ran one of the committee rooms. The support has been really lovely. A lot of the time in this place the differences that we have are highlighted, but at the end of the day we are all people trying to do the best for our constituents and we all care about people.
For me, as a mother, my natural instinct has always been to make things better for my children—that is what we all do. Rebecca is always going to be the baby I gave birth to 36 years ago; you love that child instantly and unconditionally, and that never changes. It is terrible to be in a situation where I cannot fix something that has gone terribly wrong. But what I can do, from the privileged position I have of being a Member of this place, is raise awareness and campaign for a change in the law, to that of deemed consent. The change in the law needs to come, and I want to touch on the investment that needs to happen on the back of that change—this has been alluded to in a number of contributions today.
This issue needs to be discussed in schools and among families, so that transplantation becomes a normal part of the conversation of life. We also need investment in the health service to support what I believe will be an increase in the number of available donor organs.
Andrew Percy (Brigg and Goole) (Con)
I wish the hon. Lady and Rebecca all the very best for the future. The Bill is really important, which is why I am here to support it, but will she also acknowledge, as I am sure she will, those live donors who give an organ? My friend Jane has recently given a kidney to her nephew-in-law. That is an incredible thing to have done—for many of us, it is difficult to imagine it—and it has turned around the life of her nephew-in-law, in the same way that, I hope, Rebecca’s life will be turned around eventually. Although the Bill does not cover such people, they also deserve the House’s praise. Hopefully, another good thing that will come out of this debate is raised awareness of that possibility.
Julie Elliott
Absolutely. Five members of my family, including me, put ourselves forward to be donors, but none of us matched. Matching is really difficult. One family member is now entering a pool situation, which is a bit like a swap shop of organs, in case somebody has an organ that fits Rebecca and my family member’s fits somebody else. That is a marvellous thing to do and the hon. Gentleman is absolutely right to draw attention to it.
As has been mentioned, presumed consent does mean that people have the right to opt out of giving their organs, and some people will. It is very important for that to be in the legislation. I absolutely respect people’s decision to opt out, because it is not the right thing for everybody. That is as important as changing the law.
My final words are for the families of donors: your selflessness in donating your loved ones’ organs at a time of such personal grief, to save the lives of people you do not know, is such a wonderful thing. Everybody should be grateful for that and thank those people. The grief of having lost a loved one carries on forever, but I am sure that there is some comfort in the fact that their family has helped and their loved one’s organs have gone to help someone else. It is important to say thank you. As a family member of, hopefully one day, a recipient, I want to say thank you from the bottom of my heart. They are very special people.
Let us send the Bill to Committee and change the law to save more lives, for the thousands who are waiting for transplants. Today, we see Parliament at its best, overcoming political differences for something that just needs to change. It is a day we should be proud of.
Nigel Huddleston (Mid Worcestershire) (Con)
It is an honour to follow the hon. Member for Sunderland Central (Julie Elliott). We have all learned that her daughter Rebecca is just as strong and brave as her mother. I congratulate the hon. Member for Coventry North West (Mr Robinson) on bringing the Bill to the House and thank him for the compassionate and positive tone he has taken and for the collaborative way he is working across party lines to make sure that we drive this legislation forward.
The Bill is vital; we are talking about a genuinely life-or-death issue. It is a true tragedy that 456 adults and 14 children lost their lives last year while on the organ donation list. Every single day, somebody dies because they do not get the transplant that they desperately need. There are around 6,500 people waiting for organs who do not want to become a part of those statistics. This legislation is for them, and it is about saving lives. Organ donation does save lives: around 50,000 people in the UK are alive today because they have had an organ transplant. Some 80% of the population support organ transplants in principle and 25 million people are on the NHS organ donors list—including, I am proud to say, me. That number has risen by 75% over the past 10 years, and transplants are up 56%.
The Bill, as I am sure its author will agree, is about removing obstructions to donating while at the same time allowing anyone who does not wish to donate to opt out. As many colleagues have said, it is important that we do not attach any stigma to anybody who chooses to opt out for a variety of perfectly valid reasons.
Philip Davies
The hon. Member for Coventry North West (Mr Robinson) has identified a real issue that he supports, and I certainly have no intention of blocking his Bill. Nevertheless, does my hon. Friend share some people’s misgivings about the principle of the state presuming that people have consented to something when they have not, and the potential implications for public policy? Does he have any understanding of those misgivings about the state presuming that people have done something that they have not actually done?
Nigel Huddleston
My hon. Friend makes a perfectly valid point that I am sure will be raised again in this debate, but we are talking about a matter of life and death. All the surveys show the large number of people willing to support organ donation in principle, so it is alarming that the number who are actually on the organ donation list is relatively low, despite the fact that it takes literally two minutes. In an ideal world, everybody would be completely educated and would voluntarily make their own choice, but that is not happening. Many such issues will be raised in Committee; I hope we will be able to find a reasonable alternative.
Dr Matthew Offord (Hendon) (Con)
Is my hon. Friend aware that in the past 10 years the number of organ donors has increased by 75% and the number of transplants by 56%? Is there really a need for the Bill?
Nigel Huddleston
There is indeed, because there is still a long way to go and people are still dying because they are not getting the donations or transplants that they need. There absolutely is a need to move forward with the Bill.
Let us look at the alternative systems around the world. The example of Spain is often mentioned. We are looking at the system there as some kind of model, although perhaps not an exact one. Spain leads the world with 43.4 deceased donors per million. It is joined at the top of the statistical league table by other opt-out systems in countries such as Croatia, Portugal, France and Italy. All these countries have better donor rates than England and all have opt-out rather than opt-in systems. Another advantage of such “soft” opt-out systems is that they do not deny or restrict the role of bereaved families, and they allow families to be consulted on the wishes of their loved ones. That is important.
One thing that surprised me about that 43.4 per million figure was how incredibly low it is. Half a million people die in the UK every year, yet just 1% of them die in circumstances or conditions that allow them even to be potential donors. It is important to note that just because someone is on the donor list, that does not mean that they will end up donating their organs, but we need to get the figure as high as possible to help as many people as we can.
We also need the supporting infrastructure to enable those who wish to donate actually to do so. We have all heard about people who have been willing to donate their organs but have, for example, passed away at the weekend in a hospital in which there is no capability to take the organs out of their bodies and transplant them. We need to look carefully at the supporting mechanisms for any changes that are introduced.
Quite a few colleagues have mentioned the need to raise overall awareness, which is linked to the need to encourage family consent. It is telling that in cases where a specialist nurse is involved, donation consent rates are 68.6%, whereas if a specialist nurse is not involved, consent rates plummet to 27.5%. That is clear statistical evidence that when people are provided with impartial but expert information about the possibility of donating, they are more likely to consent to donating their organs.
One problem is that there is still an awkwardness or queasiness about the idea of one’s body being examined and operated on post-death. We are often comfortable about that ourselves, but, in the horrible circumstances of someone passing away, particularly if the circumstances are tragic or the death unexpected, our families are particularly queasy about the idea. It is therefore vital that we continue to have these dialogues—that we all go home and have these conversations with our families, including our children, because of course children can also become donors. We must have informed conversations.
It is simply not right that 80% of people say that they would be willing to donate their organs, but only 36% actually register to do so. The number is increasing, but we need it to be much higher. In a well-publicised opt-out system, those figures could converge, and the 20% who are unwilling to donate would have a simple mechanism for making sure that they do not have to do so.
Many years ago, I was asked if I had a private Member’s Bill—I think it was during one of the selection processes—what would it be. It would be exactly this one. The hon. Member for Coventry North West should be in no doubt that I fully support this Bill, and I hope that many of, if not all, our colleagues will do so too.
Mr Virendra Sharma (Ealing, Southall) (Lab)
Thank you, Madam Deputy Speaker, for giving me the opportunity to speak in this very important debate. I congratulate my hon. Friend the Member for Coventry North West (Mr Robinson) on bringing this Bill forward in the Chamber and on raising our awareness of the issue. I also thank and congratulate my colleague, my hon. Friend the Member for Sunderland Central (Julie Elliott), on her very emotional, personal and courageous contribution to the debate. I am quite confident that the public and Members will have taken note of it.
Others have spoken at length about the importance of raising donation rates. I have my own personal reasons for supporting the move: my younger brother has been waiting for more than five years for somebody, somewhere, to donate a kidney. He has dialysis four times a week. Another very close personal friend is also going through the same difficult times. Therefore, I have those reasons for supporting the Bill, as well as my own personal views, and a moral commitment to the cause.
As many colleagues have said, more than 6,000 people are still actively waiting for a transplant in the UK. Three people die every day because they cannot get the transplant that they need, ruining family lives across the country. Over the past 10 years, the number of donors has increased by 75%, which is fantastic and has saved countless lives, but there is still a great shortage both in the UK and—as we are a global community—internationally as well. If we go to any country, we are asked, “What are you doing in this field?” I am glad that, once again, Britain is leading in this field, so that the rest of the world can learn and pick up its ideas from here.
Only a third of eventual donors are registered to donate at the time of their death, and this number is even lower among the black, Asian and minority ethnic communities. BAME patients fare far worse than other patients. They will, on average, wait six months longer for a transplant than a white patient. I do apologise if my language is not politically correct, but for convenience, I will use black and white in this case. BAME people face the struggle of comparatively rare blood and tissue types and compatible organs. Although the overall number of donors has increased by 75%, BAME donations have only increased by less than 7%—a fraction of the rate for white people—and that has translated directly into deaths.
There is still a problem with public education and awareness. The families of minority populations are also less likely to consent to organ donation when asked after death: 64% of BAME families refuse permission for donation compared with only 43% for the rest of the population. An opt-out system rather than an opt-in system will increase the likelihood that donors of the same blood and tissue types are available to members of the BAME community. Increasing the number of compatible organs on the transplant list could save thousands of lives each year.
The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)
I thank the hon. Gentleman for giving way. He is making some extremely important points in his speech, and they are ones that I am particularly conscious of and really want to tackle. Let me amplify some of his points: of the 6,400 people on the waiting list, more than a 1,000 are from Asian backgrounds and 800 are black. I just wish to endorse his point that, in terms of racial fairness, we really need to increase donation from those parts of the community.
Mr Sharma
I am glad and thankful for the Minister’s very positive intervention and for the information that she has provided to Members in the Chamber. Activist groups and campaigners, such as the National BAME Transplant Alliance, support the move to an opt-out system, because it will ultimately save more lives across our diverse country.
Kelvin Hopkins (Luton North) (Ind)
I support everything that my hon. Friend has said. Like him, I represent a constituency with a very high proportion of people from BAME communities. There are not just fewer people consenting to donate their organs, but considerably higher rates of heart disease among these communities. Therefore, particularly for heart transplants, it is very important that we get as many people from BAME communities on to the list in future.
Mr Sharma
I thank my hon. Friend for that intervention. I was going to raise that matter myself, so I am thankful that he both highlighted and supported it.
Issues such as diabetes, high blood pressure and hepatitis are more common in BAME communities, making their members more likely to need transplant organs. BAME patients make up a third of the kidney transplant waiting list and wait an average of a year longer for a transplant than their white counterparts. Just one person can save or improve up to nine lives. One tragic death can give life to so many through organ donation and even more if they donate tissues as well.
Although ethnic minorities constitute only 11% of the UK population, they make up nearly a quarter of transplant waiting lists, and only six out of every 100 people signed up to the NHS organ donor register are from BAME communities. Opt-out can and will save lives. It respects religious differences and takes away no freedom of expression or belief. Countless constituents of mine have written to urge me to come to the House today to support the Bill, and I am proud to do so and to lend my support to my hon. Friend the Member for Coventry North West.
Peter Heaton-Jones (North Devon) (Con)
I am delighted to be here to support this Bill today. In doing so, I will not rehearse many of the arguments that have been so ably put already, not least by the hon. Member for Coventry North West (Mr Robinson), whose speech on its own was enough to persuade, I hope, all Members to support this excellent measure today. I am here to tell one story; a story that was initially raised by the hon. Gentleman. It is the story of my constituent, young Keira Ball, and her family.
On Sunday morning, 30 July last year, there was a road traffic collision on the A361, the North Devon link road. It took place only about five miles from my home in North Devon on a stretch of road that is notorious for accidents and that we are working hard to improve.
Two vehicles were involved in the accident, one of which was a car carrying members of the Ball family: Keira Ball, her younger brother Brad and their mother Loanna. Their vehicle was in a collision with another. The paramedics, emergency services and all the NHS staff of the three separate hospitals to which those three people were taken undertook brilliant work. But young Keira Ball sadly passed away two days later, on the Tuesday afternoon. She was nine years old. Her mother and brother were very seriously injured. Immediately after Keira’s death, her father Joe took the agonising decision that he wanted his daughter’s death to give life to other people and that young Keira’s organs should be donated.
I have had contact this week with Joe and Loanna Ball, who live in Barnstaple in my constituency. In particular, I sought their permission to tell Keira’s full story today. I wanted to ensure that they were happy for me to do so, which indeed they were. They recognise, as I do, that this story could be an inspiration to others. It could ensure that others sign up for organ donation and will give strength to those who face similar circumstances.
Following the decision by Keira’s father, four people are alive today who otherwise would not be. Keira donated her kidneys, heart, liver and pancreas. One of her kidneys was given to a man in his 30s who had been on the waiting list for an organ for two and a half years. The other kidney was given to a woman in her 50s who had been on the waiting list for nine and a half years. A young boy received Keira’s pancreas and liver. Keira’s heart was given to a 10-year-old boy who has very much become the figurehead of this campaign and who has been mentioned during this debate: Max Johnson. It is Max who is in many ways at the forefront of this excellent campaign. Max is alive today. It was so good to hear from the hon. Member for Coventry North West and those who were at the reception last night that Max’s mum Emma is here to watch the debate and to hear that Keira’s family are so pleased to have given life to her little boy.
That is Keira’s story and it is Max’s story. It is a story of how a very brave—and, I am sure, very difficult—decision to allow Keira’s organs to be donated has given life to four other people who otherwise would probably not be here today. That is surely the best possible argument for supporting the Bill, which will ensure that more organs are available for donation. Keira’s and Max’s story demonstrates that more organs mean more saved lives.
I welcome and fully support the Bill. Many people deserve credit for getting it to this stage, including the hon. Member for Coventry North West, whose Bill this is; other hon. Members mentioned today who have pioneered similar legislation that has not reached this stage for various odd parliamentary reasons; the Government, who have said that they fully support the Bill; and the Minister for personally driving it forward. I also give credit to Her Majesty’s Opposition, and was delighted to hear their spokesperson ensuring the smooth passage of the Bill from the Dispatch Box. It is extremely significant that the names of right hon. and hon. Members from all seven parties represented in this House appear on the Bill.
I pay tribute to the campaign by the Daily Mirror that features Max, who has life because of young Keira Ball. It has really helped to push this issue forward. Many people deserve, quite rightly, to have a stake in what I sincerely hope will be the Bill’s success. As I support the Bill, which I will do at every stage, I will be thinking of Max and Keira. It is their Bill and it is thanks to the brave decision taken by Keira’s dad on that most difficult of days that four more people have life who might otherwise have not. That is the best argument for seeing this Bill reach the statute book.
Dan Jarvis (Barnsley Central) (Lab)
It is a pleasure to follow the hon. Member for North Devon (Peter Heaton-Jones), who spoke most movingly about the incredibly contribution that his constituent Keira Ball and her family have made to this process. I pay tribute to the role that he has played in bringing that to our attention. He was also right to talk about the cross-party nature of this campaign because this is Parliament at its best. This is how the public expect us to serve in this place—to work co-operatively with others in order to make really important changes.
The House faces a clear choice today. We have the opportunity to make a change that will add huge value to our country and that will undoubtedly save people’s lives. It all boils down to whether we take the opportunity to save hundreds of lives over the coming years. I very much hope that we do not miss that opportunity and that we work together to make this change.
It has been a real privilege to be a part of the campaign that has got us to this point. In particular, I pay tribute to my hon. Friend the Member for Coventry North West (Mr Robinson), who has provided real leadership through his promotion of the Bill. He and I have sat through many meetings—I have lost count of quite how many—and it is his focus and determination to lead us to this point that have meant that we have an opportunity to do something very worth while today. I also pay tribute to all the other Members who have provided such outstanding support, particularly my hon. Friends the Members for Newport West (Paul Flynn) and for Sunderland Central (Julie Elliott), and other Members—too numerous to mention—right across the House and the political spectrum who have worked together to get us to this point.
It has been mentioned before in this debate, but I also want to take this opportunity to pay tribute to Trinity Mirror. The Mirror Group has run a relentless and tireless campaign. Its contribution to this private Member’s Bill and the broader campaign has been massive. It has conducted itself in the very best traditions of a free British press. I know that I speak for all Members when I pay the organisation the largest compliment that I can. We are grateful for everything that it has done.
It is crucial today to pay tributes and to give credit where it is due. I am looking very firmly at the Minister, who has responded in the most brilliantly sensible, co-operative and constructive way. We have sat in a lot of meetings in different places over many months, and in my relatively short time in this House I have not found anybody who has been easier to deal with than she has. She has been a great pleasure to work with, and the leadership that she has shown has been instrumental in ensuring that we have the opportunity to pass this important Bill. I thank her and her officials, who have done an important job in getting us to this place. I urge all hon. Members to think of the common good and to act in a way that I firmly and passionately believe will save countless lives.
It is worth reflecting that of all the people who died in the UK last year, only about 1% died in circumstances that would have made donation possible, meaning that, even though hundreds of thousands of people across the country are registered as potential donors, only a small handful will ever be in a situation that would allow donation to take place. This is one of the main reasons why today in the UK more than 6,000 people are waiting for an organ donation and why nearly 500 people died last year while waiting. This loss of life is devastating but not inevitable.
Today we have a precious opportunity to do something about it, and we must not miss it. Moving to an opt-out system for organ donation will add thousands of names to the donor register, meaning that once the Bill is passed hundreds of lives will be saved. Let us be clear about what the Bill is not. It is not about the state taking control of people’s organs or shaming individuals into donating. If people want to opt out, that is absolutely fine, and I am hugely respectful of any decision people want to make. No questions will be asked; there will be no hard feelings. The Bill is about making it easier for those who might wish to donate to do so.
Sandy Martin
Mention has been made of religiously inclined Jewish people in this country. Some people will feel uncomfortable about the concept of donation. Does my hon. Friend agree that people from various religious traditions—not just one—might feel uncomfortable about this and that it is entirely right to give them the opportunity to opt out, if they wish to do so?
Dan Jarvis
I wholeheartedly agree with my hon. Friend. He makes an incredibly important point. This is absolutely not about shaming anybody into doing anything they do not want to do. If anybody, for whatever reason, decides they do not wish to be part of the scheme, they have the right to opt out. It is incredibly important that we be clear about that.
It is also worth reflecting on the point made by my right hon. Friend the Member for Leeds Central (Hilary Benn): the current system requires people to take the time to discuss this most serious and difficult matter with their loved ones in order to reach a judgment about whether, in the event of some tragedy occurring, they would want their organs to be donated. It is incredibly important, if people feel they can have that conversation with their loved ones, that they do so, but we understand that people lead busy lives, and many of us will be guilty of not having had these conversations and of putting these tasks on hold.
I believe, however, that we can no longer afford to ignore this issue. It is a matter of life and death for thousands of people around the country, which is why we must increase the number of people on our donor register and make sure we save as many lives as we can and that no more people die waiting for a transplant simply because a potential donor was not able to sign up.
Paula Sherriff (Dewsbury) (Lab)
I thank my hon. Friend for making such a powerful speech. We often think of donors as being younger people whose bodies and organs are in particularly good shape, but my beloved grandfather, when he died a few years ago—I think he was 96—was able to donate parts of his eyes and so give the gift of sight to other people. We received a letter from the hospital telling us how many people he had been able to help. Everyone has an opportunity, no matter how old they are, to offer that amazing gift to another after they have gone.
Dan Jarvis
My hon. Friend makes an incredibly important point, as she always does. As others have said, the Bill is only a part of the way to increase the number of people, whatever their age or background, willing and able to contribute their organs. In concert with the Bill, however, we also need to have an open discussion in our communities about the importance of making a proactive contribution in this way.
Kelvin Hopkins
My hon. Friend the Member for Dewsbury (Paula Sherriff) made a very important point about age. I have come here, as somebody of a certain age, with my donor card, which I have carried all my adult life. There is the thought that the organs of someone my age might not be in as good a state as a young person’s and therefore might be less likely to be used in transplants, but bodies can be used for medical research—perhaps into ageing, for example. I like to think that people of my age could still donate their bodies, even if they die from natural causes, and I will make sure that that is included in my will, so that my body could be used for medical research or perhaps for teaching medical students.
Dan Jarvis
My hon. Friend makes an important point. It reinforces the notion that, in addition to legislation, all of us who believe in the value of organ donation should ensure that as many people as possible register. The Bill will play an important role in that, but all of us, as leaders in our communities, have an absolute responsibility to get that message across to our constituents.
I do not intend to detain the House much longer, but I do want to make the point that we are lucky and privileged today to be joined by Emma Johnson. Emma is often referred to as “Max’s mom”, although I do not think she minds. As the hon. Member for North Devon mentioned, Max is the 10-year-old who fronted the Daily Mail’s campaign on organ donation. He was kept alive by a tiny metal pump that was in his chest for seven months. I am delighted to learn that, after finally receiving a heart transplant, Max is doing well. His story and that of the sacrifice made by Keira Ball, spoken of movingly by the hon. Gentleman, should serve as an inspiration to us all. We are here today to save lives like Max’s: those of the thousands of people who would benefit from the change set out in the Bill. We have a precious opportunity to make that change today. We have at our fingertips the opportunity to make a powerful, important and meaningful change.
Mark Tami (Alyn and Deeside) (Lab)
It is not entirely the same, but my son Max is alive today because he received a stem cell transplant. Does my hon. Friend agree that we need to do more to encourage people on to the stem cell register and that, as with transplants, we must get rid of the myths—in this case, that stem cell donation is painful and difficult and that they take part of your spine? None of that is true. It is a very simple process, and one by which many more lives could be saved.
Dan Jarvis
I absolutely agree with my hon. Friend. None of these things should be particularly contentious. I understand that there are points of debate and that some hon. Members and people in the country have legitimate differences over these most sensitive of matters, but I am encouraged by the level of support today and heartened that we have the support of the Prime Minister and the Leader of the Opposition. It is incredibly encouraging that the Minister is very supportive and that the Opposition Front-Bench spokesperson has given a clear commitment that they will support the Bill. There is overwhelming support for the measure in the House today. So far we have seen Parliament at its very best, and I am keeping my fingers crossed that we can maintain the consensus for the next couple of hours.
Mike Wood (Dudley South) (Con)
I support the Bill today. Like my hon. Friend the Member for Shipley (Philip Davies), I am not entirely comfortable with the principle of the state taking control of bodies without express permission, but I think that that option is far less bad than the situation whereby hundreds of lives are unnecessarily lost every year effectively through inertia. We know that action could be taken that most people would agree with. The hon. Member for Coventry North West (Mr Robinson) referred to the massive gap between the number of people who agree with donation and would be willing to be donors and the far smaller number of people who actually register as donors.
None the less, a number of points have been raised with me by constituents that I hope the hon. Gentleman and the Minister will consider during the passage of the Bill to strengthen it further. First, we should strengthen the safeguards—I was reassured by the hon. Gentleman’s comments on this—to make sure that hospitals are absolutely sure whether people are on the register. It must not be a question of, if systems are down, hospitals taking a chance and operating anyway. If people have actively opted out, we need to have belt and braces to make sure that their choices are respected. Secondly, we need to strengthen the existing law in other areas to make sure that in no circumstances can organs be harvested to be sold, which would clearly be outside the scope and the intention of this Bill.
This is a very worthwhile and important Bill. My constituent Sam emailed me this morning to say:
“This important change in legislation will prevent the needless waste of usable healthy organs being sent for cremation when they could instead change many thousands of lives.”
Ms Marie Rimmer (St Helens South and Whiston) (Lab)
I pay tribute to my hon. Friend the Member for Coventry North West (Mr Robinson) for introducing this Bill, which speaks to our common humanity. To be in the Chamber today to support it is a great honour for me. Three people die daily in the UK because of the lack of available organs for transplant, and this Bill would increase the chance of an unwell person and a life-saving organ being united.
I pay tribute to my hon. Friend the Member for Sunderland Central (Julie Elliott), who described very similar situations to those of a member of my family who was successful, in the end, in getting their transplant. She was a mother with a newly born third child. We did not know what was wrong with her. She had no energy, could not pick the other children up from school, was not eating, and was often going to the hospital. Eventually, after her husband took her to hospital, she was whisked off to Birmingham. Fortunately she got a kidney transplant while she was there, but unfortunately it was not successful, and we were told that it was highly unlikely that another suitable kidney would be found within the time when it was needed. Thankfully, we got that kidney, she lived, and three children still had their mum. The trauma that the family went through during that time was just unbelievable. We saw the care that the immediate family had to give those three children when she and her husband—my cousin—were in Birmingham. They took care of the children and did what they could. We have been the recipients of the saving of a family—a dear family.
This Bill will change individuals’ autonomy to choose what happens to their own body. Opt-out organ donation carries with it the weight of 80% public support, the support of the British Medical Association, and cross-party political support—all seven parties are represented among the Members who have sponsored the Bill. It also carries the support of past and present Prime Ministers.
I would like to talk about another case in the town that I represent. Last year, tragically, we lost a little girl aged four, Violet Grace, who was killed in an accident on her way home, with grandma, from the nursery. It was a criminal act, with a car going at 80 mph in a 30 mph zone. The parents of little Violet Grace took the brave decision to donate their four-year-old daughter’s organs. Today, we know that two lives were saved. The family tell me, and all the town, that they get great comfort from that. When her little brother asks about her, they try to explain that to him so that he can grow up with that knowledge.
The parents of Violet Grace have been joined by the widow of another person in my town, Steve Prescott, a former champion rugby league player. He had a multiple organ transplant that was successful, but unfortunately there were some other complications.
Paula Sherriff
Does my hon. Friend agree that although it can sometimes be a difficult conversation, these situations also bring about the opportunity for families, friends and loved ones to talk about what they want to happen after their death, including things like funeral arrangements? I knew from a very early age that when I went, I wanted to donate my organs. I still have my original organ donation card, which is over 30 years old now. Hopefully this debate will get the media attention that will encourage people to have that conversation with those they love.
Ms Rimmer
Yes, I do agree.
Steve Prescott’s widow, along with colleagues, friends and members of the community of St Helens, set up the Steve Prescott Foundation. She also approached the parents of Violet Grace to give comfort and support. They have set up a huge and very successful campaign in our town, urging us all to donate our organs. Steve died, unfortunately. The actual transplant—a multiple organ transplant—was a success, but it was other things that killed him. I pay tribute to the families involved, and to the parents of little Violet Grace for their bravery. This Bill would have saved them the trauma of making that decision at such an emotional time when their little girl was dying. It could save people a lot of trauma.
This is the moment to act. A move to opting out would save a predicted 500 lives a year. Done properly, with the right publicity, the right engagement and the right involvement of all communities, changing the law on organ donation should have the support of all of us. The support shown here today is really gratifying, and I pay tribute to the Daily Mirror, which has run a fantastic campaign. It has urged people sign up for donation even now, without waiting for the change.
I understand—perhaps the Minister could enlighten us on this—that the Government intend to go out to public consultation on how opt-out donation would be implemented sensitively. The proposal in the Bill to involve a person’s family in decisions, as a safeguard against any unregistered objection to donating, is an important protective measure that will reassure families who have concerns.
Only 5,000 people a year in the UK die in circumstances where they can successfully donate, while 6,500 people are currently waiting for life-saving donations. None of us ever expects, or perhaps even thinks about the possibility, that we or someone we love may need an organ from someone else to survive, but many Members have pointed out how it can suddenly happen in our own families. However, there is a gulf between the supply of organs and the urgent need for them, and it is time that we made a conscious decision to take affirmative action. The time is right—80% of the public support organ donation, but only 36% are on the register. That needs to be addressed.
In the first six months since Wales adopted the opt-out, 60 organs donated by 31 people have been transplanted. Consent had been received from 50% of those people. Those are the latest facts from Wales. An opt-out system has therefore been proven to work, even in its infancy. I urge the House to back deemed consent as a proven, popular policy.
The British Medical Association makes a point that goes to the heart of this debate. As a result of this Bill, the choice for the individual about what should happen with their own body will remain the same—to donate, or not to donate—but a change in the law means a switch of the default position, towards donation and towards saving more lives. I urge the House to support the Bill.
Michelle Donelan (Chippenham) (Con)
I begin by congratulating the hon. Member for Coventry North West (Mr Robinson) on getting this Bill here today. I echo the support for the Bill that Members throughout the House have expressed.
When three people die a day because of a lack of organs, while eight out of 10 people say they would be willing to be an organ donor but are not formally on the register, it is time that we take action. I can only begin to imagine the emotional rollercoaster that families and people waiting for organs must go through in the long and trying wait, which can be years. I appreciate the personal stories that Members have shared today, which must be quite distressing. I think we have all gained greater insight.
I do not want to reiterate the merits of the Bill, because we all seem to be very much in favour of it. I want to talk briefly about how we can make sure that the Bill is as successful as it can be. As I alluded to in my intervention, I think that it is only part of the solution and not the complete answer. It is the essential building block, and it is important that we are now laying that building block, but I want us to make sure that we build the house.
One key issue is fostering a culture and making sure that we educate people from a very young age, so that they see organ donation as a positive thing that they want to do. That will counter the argument about people potentially seeing it as the state owning or seizing our organs. It needs to be seen as people giving their organs to help other people.
We need to spread the message that families should have a conversation about organ donation. It should not be something that we do not like to talk about. We should actively promote a conversation so that when the time comes, people are aware of their children’s or spouse’s decision. That will prevent any possible overriding of the decision, as we see in Spain. At the moment, it is estimated that only half of all families have that conversation.
Fostering a culture in which people want to donate their organs is achievable. At the moment we have one of the lowest donation consent rates in Europe. However, we have one of the highest rates in Europe for donating living kidneys. That implies that it is not against British culture to donate organs, but that we are doing something fundamentally wrong.
One way to achieve that culture is to ensure that there is absolutely no stigma around opting out. While some of us might be organ donors, that does not mean that everybody has to be, and we need to appreciate people’s religious cultures, customs and beliefs. I hope that people will be able to opt out of donating certain organs. I know that people of some religions, including even some denominations of the Christian faith, do not want to donate their heart, so it is very important that we do not exclude people from this process.
Luke Pollard (Plymouth, Sutton and Devonport) (Lab/Co-op)
About 10% of people who are signed up to the organ donor register have excluded donating their eyes, sometimes because they are a bit squeamish and sometimes because of the thought of someone else looking through their eyes in the future. Does the hon. Lady agree that in registering as many people as we can to donate, we should preserve people’s ability to opt out of donating organs that they do not wish to donate?
Michelle Donelan
I agree. Choice is the key to making the Bill as successful as possible, as is education. Some people might donate those organs if they knew how the process would work, but there needs to be an element of personal choice. It is our body, at the end of the day, and we should be encouraging people to help others rather than forcing them, which will not be successful.
Members have made the point—I do not want to labour it, but it is important—about reaching out to all communities, including those from ethnic minorities, among whom the number of donors is particularly low at the moment. In fact, shockingly, in March 2017 there were 634 people from the black community in need of organs, and only 72 people on the donor list died and were suitable organ donors. That is a really small proportion.
Eleanor Smith (Wolverhampton South West) (Lab)
I thank the hon. Lady for raising that issue. Our community is experiencing what is called a silent crisis, because of the lack of knowledge and willingness to discuss organ donation with family members and concerns about the integration of the body after death. I take on board what she says—we must be mindful that there is a lack of knowledge among our community, and the Bill would improve that.
Michelle Donelan
I thank the hon. Lady for her intervention.
Only 1% of people a year die in circumstances suitable to allow their organs to be donated. It is important that we have an honest conversation today and do not say that the Bill is the panacea that will solve the problem, and that if someone is on the organ register, they will automatically get a donation. That would give people false hope. That statistic also means that we should potentially review the current regulations on age restrictions for the donation of certain organs. For example, heart valve donations have an age restriction of 60, whereas countries such as Spain just look at the quality of the organ.
The most important mechanism for ensuring that the Bill is as effective as possible is transport infrastructure and investment in staffing. It is no good unless we have enough helicopters, bikes, trained staff and support workers to facilitate the Bill. We must ensure that it does not just help people who live in urban areas. My constituency is very rural in parts, and some areas are harder to get to, but that does not mean that people there should be any less likely to benefit from donations. Other countries that have introduced Bills such as this, including France, Sweden and Bulgaria, have seen a reduction in their organ donation rates partly because of a lack of investment in infrastructure, so that is crucial.
We should be quite bold in reviewing this issue. Some countries have adopted a policy that I admit I was originally very uneasy about, whereby someone who is an organ donor and has not opted out of the system is higher on the priority list to receive a donation. I now think that that is quite fair, because if someone is prepared to give a donation, they should be more likely to receive one.
The UK has one of the lowest donation consent rates in the world, and that is really not good enough. I am hugely supportive of the Bill, but I echo the caution that it depends on the infrastructure, education and support that we give people, so that we can ensure that the Bill is as successful as possible.
Karen Lee (Lincoln) (Lab)
I thank my hon. Friend the Member for Coventry North West (Mr Robinson) for introducing this important private Member’s Bill.
The NHS has just reached the historic milestone of 70 years. As a country and as a society, we are proud of the landmark advances we have made within that time. Because of advances in organ donation and transplantation, 50,000 people are alive today. Most people are willing to donate their organs after they die, but only 36% of the population are on the organ donation register. Organ donation is increasing gradually, but sadly it is not keeping pace with the number of people on the transplant waiting list.
The British Heart Foundation highlights the fact that an average of three people per day die in need of an organ. As someone who was a cardiac nurse in a previous job, I am only too aware of how desperate a patient can become when waiting for an organ to become available. I saw at first hand the distress that people suffered while waiting for a heart transplant or for another organ.
In Spain and Belgium, a softer opt-out approach has facilitated a cultural change that has generated higher donor rates. That is why I am here today supporting my hon. Friend’s Bill, which will address this bleak statistic and bring the discussion of organ donation back to the dinner tables of families across the UK. I also express my sincere thanks to the Daily Mirror for its campaign in support of the Bill, which has shown the public the gift of life that is given by those who donate organs.
One organ donor can transform as many as nine people’s lives. As has been mentioned, the UK has one of the lowest family consent rates in Europe. In Wales, the Welsh Government bravely introduced deemed consent. The rate at which Welsh families are approving rather than refusing the donation of their loved ones’ organs is showing a marked increase compared with the rest of the UK. The latest Welsh organ donation and transplantation statistics display a 72% consent rate, putting Wales above other UK countries.
Mr Paul Sweeney (Glasgow North East) (Lab/Co-op)
My hon. Friend gives the excellent example of how Wales is leading the way in changing the emphasis on organ donation. Does she share my dismay that no one from the Scottish National party has joined the debate today? This is a cross-border issue, and the SNP blocked a private Member’s Bill by Anne McTaggart MSP in the Scottish Parliament. Why has the SNP not led the way on this issue?
Karen Lee
I share that concern, and I had hoped that today we could have cross-party consensus. This issue is something on which we can all come together.
I represent Lincoln in the east midlands, where organ donation is the lowest in the UK. In a year, there were just 74 organ donors in the whole of the east midlands. In my constituency, there are around 40,000 registered organ donors. I am one of them—my card is in my bag. I am proud of the people of Lincoln, but even though that number represents a pool of opportunity, only a small number of people on the register pass away in such a way that allows their organs to be donated. In the last five years, only 10 deceased donors in Lincoln have been able to donate their organs.
Passing this Bill could save 500 lives a year. We need sensitive dialogue with those suffering from serious illnesses about the possible lifesaving capacity that their donation could have, should the worst occur. Conversations with grieving families can often be crucial in that process.
Yesterday, I spoke about the loss of my daughter, and when any family member is lost it is a terrible, terrible thing that stays with you forever. However, if someone can donate an organ and turn a negative into a positive, how much better is that? How much better would it be to salvage some positivity out of the situation? The Government have announced a consultation on opt-out consent on organ donation, which closes on 6 March, and the success of this private Member’s Bill might be the vehicle for that change. I hope that the Bill achieves cross-party support and makes progress today.
Dr Matthew Offord (Hendon) (Con)
I congratulate the hon. Member for Coventry North West (Mr Robinson) on promoting the Bill, and I know that it will make progress today. As many people have said, 80% of British society support organ donation, but 20% do not. I want to speak on behalf of that 20% to ensure that they are carried along with the debate, rather than left behind.
A gentleman in my constituency, Vijay Patel, was recently unnecessarily killed, and his family took great comfort from the fact that his organs were used to help other people. For me, that is such a gift, and I commend anyone who donates, and their families, for allowing the donation to take place. Many people prepare themselves to be organ donors after they die, and their families are an integral part of that process. Within that wider framework, the crucial role of the donor’s family must be understood, because their role regarding the ownership of the body after a person dies, and their duties towards it, is a central aspect of the grieving process.
There has recently been a lot of concern about a north London coroner who refused to release bodies, which is causing a great deal of concern to my constituents. It therefore follows logically that the family must be involved in organ donation, and I believe that their consent is paramount at the crucial time. Those families need reassurance along their pathway towards consent.
It has been said that there are religious differences on donation, but that is incorrect. Both Islam and Judaism allow organ transplants from live and deceased patients in order to continue and save lives. One factor that perhaps some are not aware of, and that might influence the decision-making process of some families, is how the point of death is decided. Some people regard death as defined by cardiovascular criteria, which is when the heart ceases to function. Others use cessation of brain function—brain stem death—as their criterion. Those two distinctions sometimes make people uncomfortable with donation.
The National Institute for Health and Care Excellence recognised both definitions of death when it formulated the NICE guidelines that explain how healthcare professionals should support a bereaved family when discussing organ donation. There is one pathway for those who accept only cardiovascular death, and another for those who accept brain stem death. As a result, families are helped to understand how they might be able to combine deceased organ donation in a way that does not interfere with some religious traditions.
Enabling someone accessible to guide a family through the donation process is a humane, sensible and constructive proposal. A properly trained and resourced transplant co-ordinator should be able to do that, as it is the most important way in which families can be supported at a terrible time in their lives. In practice, however, under the system proposed, there would be less institutional incentive for health services to employ such people.
The Government are aware of the issues around transplantation, and they cannot plead ignorance in that our religious communities are being unresponsive to human need. In 2013, leading Muslim and Jewish groups wrote jointly to the Government suggesting a way forward in which an enhanced and improved opt-in system could be introduced that would alleviate their concerns. Improvements would include a Government-backed statement that Jews and Muslims could sign, which would enable them to donate organs in a manner compatible with their beliefs. If that approach were to be adopted, it would enable the two communities to be even more supportive of an opt-in system than they have been in the past. That proposal has been raised on several occasions, but I am afraid it has been ignored. The hon. Member for Coventry North West mentioned former Chief Rabbi Lord Sacks, who he said opposed such measures. As I understand it, however, the current Chief Rabbi, Rabbi Mirvis, is in favour of the proposal I have just outlined.
Life, and indeed death, has changed for many people. More people want, understandably, to spend their final months at home. If they die at home, organ donation is much less likely. Healthcare professionals who need to secure consent for donation must have a conversation with organ donors, and their loved ones, about why they are best placed to give the gift of life if they remain in hospital. That conversation is a natural feature of an opt-in service. Under an opt-out service, there will be little incentive to have that complex discussion with potential donors and their families. The result could be that patients might drift to spend their last months in hospital.
Bob Stewart (Beckenham) (Con)
May I ask my hon. Friend, as a doctor, how quickly the medical profession can assess whether someone who has died is the right sort of person for a donation? So few people are the right fit for a donation—1%, as I understand.
Dr Offord
I cannot mislead the House, because unfortunately I am not a medical doctor and I am not able to answer that question. I am certainly content to talk about socio-economic deprivation in places such as Cornwall, which was part of my PhD thesis, but I will leave the issue raised by my hon. Friend alone. He mentioned the 1%, but other potential donors and their families could be intimidated by clinical settings, have problems with language skills or be too emotionally distraught actively to engage with a system that lacked incentives to ensure professional support throughout their decision-making process. Such potential donors and families could find their rights eroded in that practice.
My hon. Friend the Member for Shipley (Philip Davies) made a point that I wish to echo. The underlying question raised by some considerations is whether public services should treat patients and their families as citizens whose active consent must be sought as a legal duty, or as subjects whose ability to choose whether to donate or not depends on the goodwill of well-meaning but overstretched professionals. Ultimately, an opt-in system that harnesses the role of both religious and civil society to increase organ donation from deceased donors is, for me, the best way forward to maximise organ donation while defending not only religious freedoms, but the rights of all potential donors and families.
Kevin Foster (Torbay) (Con)
I will keep my remarks brief, Madam Deputy Speaker. I too support the Bill and I am delighted that the hon. Member for Coventry North West (Mr Robinson)—my hon. Friend; I have known him for a number of years—has used this slot for this very noble cause.
I would like to mention the Bright Green Stars campaign in Torbay. Four years ago, the Bright Green Star Man hung up stars across various points in the bay to encourage more people to think about organ donation. When his daughter Lottie was three, she was one of the lucky ones to receive a transplant very quickly.
The safeguards in the Bill provide an option for those who strongly object to the idea of organ donation, and the ability for families to provide evidence that someone would have objected, on reasonable grounds, if they had known about the opt-out system. Let us be clear: I do not see my body as a piece of property that my relatives will inherit on my death. I see it as something very special, and if there is something we can do to help people to continue to live after our life on this earth has finished, I think that is totally noble. One way I can help is not just by registering to be an organ donor, but by supporting the Bill today. It will save lives in Torbay and across the country. I hope the Bill receives its Second Reading.
Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)
I thank my hon. Friend the Member for Coventry North West (Mr Robinson) for securing this very important debate, for introducing this very important Bill and for his powerful and moving opening speech. I would also like to thank the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan), the hon. Members for Mid Worcestershire (Nigel Huddleston), for North Devon (Peter Heaton-Jones), for Dudley South (Mike Wood), for Chippenham (Michelle Donelan) and for Hendon (Dr Offord), and my hon. Friends the Members for Ealing, Southall (Mr Sharma), for Barnsley Central (Dan Jarvis), for St Helens South and Whiston (Ms Rimmer) and for Lincoln (Karen Lee) for their excellent speeches.
In particular, I pay huge tribute to my constituency neighbour, my hon. Friend the Member for Sunderland Central (Julie Elliott). She spoke so bravely and movingly about her daughter Rebecca, who as we heard has been on dialysis for a year awaiting a kidney transplant. I hope from the bottom of my heart—I am sure we all do—that her wait is over very soon and she is successful in receiving that gift of life from a wonderful donor.
This has been an excellent debate and an example of this House at its best, as it often is on Fridays during debates on private Members’ Bills. I would like to thank hon. Members who have previously brought this issue to our attention over the past decade or so, including my hon. Friends the Members for Mitcham and Morden (Siobhain McDonagh), for Newport West (Paul Flynn) and for Barnsley Central.
I commend the Daily Mirror for its fantastic campaign to raise awareness of organ donation since the case of Max Johnson, who we have all heard so much about this morning. He was then a nine-year-old boy in need of a new heart. I understand he is now 10, which is fantastic. I want to thank the hon. Member for North Devon for telling us all about Keira Ball, Max’s donor, who I understand saved four lives. I thank her very, very brave family for taking that brave decision on that most awful of days. I also thank the more than 13,000 people who have now signed the Change.org petition.
I also commend the scriptwriters of “Coronation Street”—of which, it has to be said, I am a huge fan as a northerner—for covering this issue so well. I note that the character Carla Connor this week received a kidney from her half-brother and that all is going well. At their best, soaps can play a huge part in helping to inform the public on such issues. I hope the storyline will touch on the importance of being on the organ donation register. Finally, I pay tribute to the thousands of people who have already participated in the Government’s public consultation on organ donation. I encourage others to do so, if they have not done so already, to let their voices be heard.
The topic of organ donation is understandably an emotional one, but I am pleased that so many people are now engaging in this debate and that we have the opportunity to discuss it in the House today. This debate and the publicity around it may encourage families up and down the country to have that important discussion about organ donation before the inevitable happens. There is no doubt that these discussions need to be had and that we need more organ donors in England. Almost 25 million people are on the organ donation register, but according to the NHS blood and transplant service, 7,000 people are waiting on the list for new organs. For them, it really is a life or death situation, so it is important that as many people as possible sign up to the organ donation register.
Over the past five years, almost 5 million people have joined the register, and in 2016-17 we saw the highest ever deceased donor rates in England. More than 50,000 people are living with a functioning transplant—Max is one of them—thanks to organ donation and transplantation in the UK. These are welcome developments, but we still have a long way to go. We currently lag behind other western countries. Tragically, around 1,000 people die every year—that is three a day—while waiting for a transplant. To save those lives, we need more people on the organ donation register making those decisions with their family’s knowledge, so that when the time comes, more lives can be saved.
Mr Sweeney
My hon. Friend makes an excellent case by citing statistics in England, but this is a cross-border issue as well. A great strength of our national health service is that no matter what part of the UK someone comes from, they can benefit from an organ transplant. If someone in Dumfries needs a kidney donation and the donor is from Carlisle, there will be no barrier or border on the route to getting access to that transplant. That is why MPs from all parts of the UK should support organ donation changes in all parts of the UK. That includes the Scottish National party; it is just a shame that SNP Members are not here today. Does my hon. Friend agree?
Mrs Hodgson
Yes, and I had not noticed that nobody from the Scottish National party is here. I do not know what the situation is in Scotland, but we still want people there to be organ donors. I am sure that Rebecca, the daughter of my hon. Friend the Member for Sunderland Central, would not refuse a kidney, whether from Scotland, Wales, Northern Ireland or anywhere, so that is a very good point.
Mr Sweeney
Will my hon. Friend recognise the great strides that the Labour party in Scotland has made in trying to bring in legislation on opt-out organ donation there? It is unfortunate that the Scottish National party blocked the progress of a Bill from Anne McTaggart MSP in the last session of the Parliament, but there is still hope, because a private Member’s Bill is progressing through the Scottish Parliament. We hope to have Labour and cross-party support to see such legislation progress in Scotland, as well as in Wales and England.
Mrs Hodgson
Excellent. I am really grateful to my hon. Friend for updating us all on the situation in Scotland because, as I said, I was not aware of it. I commend that Bill and hope that our SNP friends up in Scotland will act on and progress it as soon as possible.
Matt Rodda (Reading East) (Lab)
I pay tribute to colleagues in Wales, my hon. Friend the Member for Coventry North West (Mr Robinson) and colleagues from across the country. We heard very moving stories from colleagues from North Devon and other parts. We as a House have demonstrated the ability to work together today, and that is so important. One of the great strengths of the debate has been the way that we have focused on families and listened to their stories. For me, that has been a deeply moving experience. I commend to colleagues the importance of continuing to listen to families as the campaign goes forward.
Mrs Hodgson
Families are at the heart of this, as my hon. Friend the Member for Coventry North West, who is promoting the Bill, made clear, and I am sure that the Minister will as well. It is important that families’ voices are taken into consideration when these discussions take place.
I know that I am not alone in this House in carrying a donor card and being on the register. Like many other organ donors, I signed myself up because of a direct family experience. My Aunty Ella, who is sadly no longer with us, was one of the first patients to receive a kidney transplant at the fantastic Freeman Hospital in Newcastle way back in 1967. It was pioneering surgery back then, and it is great to hear my fellow Sunderland MP, my hon. Friend the Member for Sunderland Central, also commending the work of the fantastic renal team at the Freeman Hospital who are currently treating and supporting her daughter Rebecca so well. My Aunty Ella lived a full life because of her transplant. In those days, it was perhaps not as long as she would have liked, but she was able to see her children Norman and Stephen —my cousins—grow up to get married. All she wanted to do was to see them grow up, but she lived on to see them give her grandchildren. That is what organ donation is all about: it gives people a future. Just one donor can save up to nine people—as we heard, Keira Ball saved four—and it can give those nine people a future with their loved ones, which is why it is so important.
Of course, there are some concerns among some religious communities. We heard about that earlier from the hon. Member for Hendon (Dr Offord), and I know that my hon. Friend the Member for Leicester South (Jonathan Ashworth), the shadow Secretary of State for Health, has met representatives of one particular Jewish community to discuss their concerns. There are also concerns among black and minority-ethnic communities, as we heard from my hon. Friend the Member for Ealing, Southall (Mr Sharma). Although they are more susceptible to illnesses such as diabetes, hypertension and even heart disease, only 35% of black and Asian people in the UK—where the population average is 63%—agreed to organ donation last year.
Mark Tami
The same applies to stem cell transplants, which I raised earlier. It simply is not acceptable that those who happen to be white probably have an 80% to 90% chance of finding a possible match, whereas for those who come from a certain ethnic background the figure could be as low as 30%. I do not think we would accept that in any other walk of life.
Mrs Hodgson
My hon. Friend has made exactly the right point. This does not apply only to, for instance, kidney and heart transplants; it applies to the whole donor register. The Government must listen to the concerns of black and Asian communities, not just during the consultation but beyond, so that we can develop a solution to this problem.
Eleanor Smith
I hope that the Bill succeeds and that there will be consultation with members of the BME community to ensure the successful delivery of a public education programme to increase awareness.
Mrs Hodgson
That is precisely the point. It is a question of education and public awareness as well as the acceptance of the sensitivities that exist among all people, not just members of particular religious or ethnic-minority communities.
Mr Virendra Sharma
I am sorry to interrupt my hon. Friend while she is making such a strong point. One of my constituents rang me after my speech to suggest first that Members of Parliament could run roadshows, along with members of their local voluntary sectors, to raise awareness and to encourage people to register as donors and secondly that we could encourage the local education system to enable schools and parents’ associations to run awareness sessions. Would that not be the best way of both raising awareness and engaging with communities?
Mrs Hodgson
Absolutely. I think that schools are an ideal forum for a number of public health awareness messages on a host of issues to be delivered to young people.
Perhaps the solution to all these concerns has been developed in the two countries where the opt-out system is working well, Wales and Spain. In Wales, the system came into force in 2015. The law sets out that those who live and die there will be deemed to have given consent for their organs to be used unless they have explicitly said otherwise. Before that change in the law came into effect, a public awareness campaign alone resulted in an increase in the number of organs transplanted from 120 to 160. That was not huge, but it was a definite start. NHS organ donation statistics show an 11.8% increase between 2014-15 and 2016-17 in the number of people in Wales opting to donate their organs. That was the highest increase among England, Wales and Scotland. Although there has not been a notable change since the law came into effect, it is worth remembering that—as we heard earlier—Spain took almost 10 years to increase organ donation rates significantly.
Spain has had a soft opt-out system for 39 years. It is considered to be the world leader in organ donation and currently has the highest organ donation rates in the world. In Spain, consent is presumed in the absence of any known objection by the deceased, but family consent is still sought, as it would be here, we hope. In the immediate aftermath of this change in law, there was only a small increase in the number of organ donations and transplants, but there was a dramatic increase after 1989, when the Spanish Government made a big push to reorganise organ donation, as a result of which there was a medically trained transplant co-ordinator in every hospital by 1999.
It is unlikely that we here in the UK will have an identical opt-out system to Spain’s, but these are just two examples showing how an opt-out system can work and improve the lives of thousands of people waiting for an organ transplant. This also gives us the opportunity to learn from past experiences, to ensure we get it right in this country, which I am sure we all seek to do. I know the Government will be working to ensure that that is what happens, and the Opposition are passionate about world-class health services, but, as the NHS Blood and Transplant service made clear, we
“will never have a world-class donation and transplantation service if more than 4 out of every 10 families say no to donation.”
Some 90% of people surveyed by the British Heart Foundation say they support organ donation, but just 33% of those surveyed are on the NHS organ donor register. It is clear from what we have heard today that more people need to be on the organ donor register, and these difficult conversations must be encouraged, so that more lives can be saved.
Luke Pollard
During this debate, I went on to my phone and signed up as a full organ donor. Previously, I was a bit squeamish about giving my eyes, but I have been convinced by the arguments. Signing up only took two minutes; it was simple to do, and every Member could be encouraging our constituents to do so, too, by just going on to their phone and registering now, so we can get more donors before this Bill becomes law.
Mrs Hodgson
That would be great. Even the most technophobe of us should be able to manage doing that if it takes only two minutes, and maybe there could be one of those clever apps to make it even easier for all the young people to do this.
Stephen Pound (Ealing North) (Lab)
I have no knowledge of apps, but I do have my donor card here, held proudly in my hand, which I got by telephoning. When I introduced my Bill on this subject many years ago, I was accused, as were the supporters—including Dr Evan Harris, who brought in the Bill with me—of being Aztecs. Does my hon. Friend agree that the tide is now flowing in our favour and this is a piece of legislation whose need has been proven, but whose time is now?
Mrs Hodgson
Yes, very good, and I must apologise for not commending my hon. Friend for his Bill when I listed the people who had done work on this over the years. That makes us realise how many people have been pushing for this, and if my hon. Friend the Member for Coventry North West is successful today, his great achievement will be following in many other Members’ footsteps.
Whether it is clever people with their apps or people carrying the old-fashioned donor card, we in the Opposition and nearly all of us, or perhaps all of us unanimously, across the House this morning are in favour of a change to the organ donation law, to ensure that everybody whose life could be saved by organ transplant can have the gift of life. I therefore urge the Minister today to take the necessary steps to increase the number of people on the organ donor register, and I am sure this Bill will be a great asset in helping her to achieve that goal.
The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)
I thank the hon. Member for Coventry North West (Mr Robinson) for bringing this Bill to the House; he has secured his fortunate position in the ballot and used it constructively. I am therefore grateful to him and confirm that the Government will give his Bill our wholehearted support. It has been an absolute pleasure to work with him and the hon. Member for Barnsley Central (Dan Jarvis) and to get to the place we are in now, having a Bill we can all support. The reason why we are here, in a relatively painless way given our discussions, is that we were all focused on the shared objective of saving lives and securing the availability of more organs for donation. I am extremely grateful to him, and I wish the Bill Godspeed and hope that it gets on to the statute book as soon as possible.
We have heard some moving stories today, and I want to make particular reference to my hon. Friend the Member for North Devon (Peter Heaton-Jones), who talked about the bravery of Keira Ball, who has saved four lives. I shall say a little more about that later. I also want to thank the hon. Member for Sunderland Central (Julie Elliott), who spoke movingly about her daughter. The real thing about this subject is that once we hear the human stories about people who have given organs, consented to their relatives doing so when they have been bereaved, witnessed family members needing an organ or indeed been a live donor, we cannot fail to be touched by their experiences. It is certainly with considerable commitment that I will do my bit to ensure that more organs become available for donation.
Mark Tami
I have spoken briefly about my own experience with my son, who was able to get a stem cell donor. We were in hospital for quite some time, and I saw many parents who did not find a donor. That was very difficult, and, to be frank, I felt a degree of guilt because we were fortunate and I knew that I was looking at someone whose child was going to die. That is a heartbreaking situation, and we need to do whatever we can to ensure that more people get on to the register and donate organs.
Jackie Doyle-Price
The hon. Gentleman puts that as well as it could possibly be expressed. That is entirely the motivation behind the Bill. We are losing too many people each year because they need organs, and it would be a poor Health Minister who did not do their best to remedy that. He is absolutely right to describe the very real impact when we see people in that situation. I have been on my own journey with my constituent, who has already been mentioned by the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy). My constituent painfully lost her daughter, who was waiting for a transplant, and she has used that experience to campaign for this important cause. She has also taken the step of becoming an altruistic donor herself. Who could fail to be inspired by such a story? I am pleased to be able to deliver on the promise that I made to Patricia, when she came to see me for the first time, that I would do everything I could to secure more organ donations. And here we are today, delivering that.
Last October, the Prime Minister pledged her personal support to change the law on organ donation and, in doing so, to help more people across the country to achieve an organ transplant. We should also remember the contribution of Max Johnson, whose struggle was embraced by the nation and who has done so much to highlight this important cause. As a consequence, we in the Government will be referring to this legislation as Max’s law, and we will do everything we can to ensure its passage. In that regard, I am grateful for the Opposition’s support, which will ensure that it has a speedy passage. With such cross-party commitment, we should not fail. As Max, his family and families all over the country who have experienced life on the transplant waiting list know, organ donation is a precious gift, and the family of Keira Ball deserve our special tribute. The fact that she has saved four lives is incredibly inspirational.
I want to echo the tributes that have been paid to the Daily Mirror. We do not often talk about national newspapers in a complimentary way in this House, but the Daily Mirror has done a fantastic job of highlighting this cause. This illustrates what the press can achieve when it puts its mind to something positive. I echo the tribute paid to “Coronation Street” by the hon. Member for Washington and Sunderland West (Mrs Hodgson). Like her, I am pretty addicted to the soaps, and we should not leave out “EastEnders”, which highlighted live liver transplantation last year. She was right to say that the soap operas have also been good at highlighting mental health, but it is particularly apposite that we have seen the organ donation story this week. I commend “Coronation Street” for tweeting a link to the Government consultation in the immediate wake of that programme, which I think is a first. It would be helpful if soap operas highlighted future Government consultations, but I do not think it will be common.
I will be fairly brief in addressing some of the points that have been raised. A number of Members expressed concern about moving from an opt-in system to an opt-out system, and I reassure them that the concept of organ donation being a gift voluntarily given by the donor remains central to the Bill’s principles. There can be no question of the state taking control of organs, which is why the ability to opt out is central to the Bill. Opting out will have to be made extremely easy, and people will have to be able to continually revisit their decision if they wish to change their mind.
It is also central to the Bill that family consent is respected. The circumstance in which someone is able to donate their organs is clearly traumatic and difficult. In considering the whole period at the end of life and the struggle that surgeons are undertaking to save lives, it is important that we are sensitive about that time. We need to be sure that, once someone has lost the capacity to give consent, their family, as next of kin, have their rights protected. I have no doubt that we will explore some of those issues in Committee.
I put on record the representations I have had from the medical establishment, which would feel uncomfortable if consent were not sought from the family. In developing a regime that secures more organs but is also sensitive to everybody’s views, we are able to strike the right balance in the Bill.
Tom Pursglove (Corby) (Con)
I entirely support the Bill. Has the Department given any early thought to public engagement, so that people are aware of any changes coming into force and of what those changes mean?
Jackie Doyle-Price
My hon. Friend will be aware that we are consulting on the principles enshrined in this Bill. That consultation will end on 6 March, and we will reflect on those representations. As we have already heard, we are seeing an unprecedented response to the consultation, and there is a substantial degree of support. The consultation will inform our communications.
We have also heard a lot about the high incidence of people from Asian and black backgrounds on the waiting list, and again that is a priority for the Government. The hon. Member for Ealing, Southall (Mr Sharma) said MPs should show leadership. We are leaders, and it is certainly something that I want to do. I have a large black African community in my constituency that I am engaging with on this issue. With that in mind, I have tasked NHS Blood and Transplant to develop MP toolkits that we can all use to go out into the community to sell the concept of organ donation. As and when those toolkits are available, I hope to have support from many Members in rolling out that communication.
Mr Pat McFadden (Wolverhampton South East) (Lab)
Will the Minister give way?
Jackie Doyle-Price
I would like to make progress, so I will take no more interventions.
As I have made clear, we support the Bill and are determined to secure more organs for transplant, because we are concerned that we are losing lives unnecessarily. People have referred to the experience in Wales and whether the learning from that will achieve a material difference. At this stage, it is too early to draw any conclusions about the number of organs that the change in Wales has secured, but we have seen an increase in consent and opting on to the register. Our best estimates are that the change will secure an additional 100 donors a year, which could lead to the saving of 200 extra lives.
Jackie Doyle-Price
I will take no more interventions.
On the basis that we could save 200 lives, we wholeheartedly support the Bill. I look forward to working with all Members to secure Royal Assent.
Mr Robinson
I do not much like self-congratulation, and moments when the House gets self-congratulatory can be embarrassing, but on this occasion I am delighted to say that we have seen the House at its best. I say that because we have had a debate where not only have high standards of rational argument been deployed, but deep emotions—we all feel them—have not been kept from us. That unique combination today has enabled us to have the cross-party consensus of the size we have achieved, on a Second Reading of a Bill that is, perhaps, contentious in nature in some respects. I note that the Secretary of State for Health has just arrived and so, while plaudits are being awarded, may I just say that his support from the very beginning has given great encouragement to me and to my hon. Friend the Member for Barnsley Central (Dan Jarvis)?
This is a great moment for us. I hope that there will not be a Division, but I am sure that if there is one, we will win it. I am sure that we will be able to go out of the Chamber knowing that the Bill has passed its hurdle of Second Reading, that we are going into Committee and that with any fair wind from the Government by the end of the year we will have the Act—Max’s Act, as we should call it—on the statute book. I look forward to that moment and to saying that, at least in this Parliament, we did pass an Act for life, and I am delighted, on that note, to be able to conclude the debate.
Question put and agreed to.
Bill accordingly read a Second time; to stand committed to a Public Bill Committee (Standing Order No. 63).
Organ Donation (Deemed Consent) Bill
Wednesday 12th September 2018
(5 years, 7 months ago)
Public Bill CommitteesRead Full debate Organ Donation (Deemed Consent) Act 2019 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 12 September 2018 - (12 Sep 2018)
The Chair
Welcome to this Public Bill Committee on the Organ Donation (Deemed Consent) Bill. I will make some preliminary announcements: please switch electronic devices to silent; tea and coffee are not allowed during sittings; and a selection list for today’s sitting is available in the room, showing the order of the debates. In this case it is a single debate, so if you would like to speak, please do so in this part of the debate as there is no other option. Decisions on the amendments and clauses will take place in the order in which they appear on the amendment paper.
Clause 1
“Appropriate consent” to adult transplantation activities: England
Mr Geoffrey Robinson (Coventry North West) (Lab)
I beg to move amendment 1, in clause 1, page 1, line 16, leave out “relevant” and insert “permitted”.
Amendments 1 to 3 replace references in new subsection (6A) of section 3 of the Human Tissue Act 2004 to “relevant material” with references to “permitted material” which is defined in the provision inserted by Amendment 4.
The Chair
With this it will be convenient to discuss the following:
Amendment 2, in clause 1, page 1, line 19, leave out “relevant” and insert “permitted”.
See the explanatory statement for Amendment 1.
Amendment 3, in clause 1, page 1, line 20, leave out “relevant” and insert “permitted”.
See the explanatory statement for Amendment 1.
Amendment 4, in clause 1, page 2, line 10, at end insert—
“‘permitted material’ means relevant material other than relevant material of a type specified in regulations made by the Secretary of State.”
This amendment defines “permitted material”, which will be used in new subsection (6A) of section 3 of the Human Tissue Act 2004 as a result of Amendments 1 to 3. The definition has the effect that the new provision about deemed consent will not apply in relation to relevant material of a type specified in regulations made by the Secretary of State. “Relevant material” is defined in section 53 of the Human Tissue Act 2004.
Amendment 5, in clause 1, page 2, line 11, after “of” insert
“the definition of ‘excepted adult’ in”.
This amendment is consequential on Amendment 4.
Clause 1 stand part.
Amendment 6, in clause 2, page 2, line 36, at end insert—
“( ) In section 52 (orders and regulations), in subsection (3) (statutory instruments to which negative procedure does not apply), after ‘1(11),’ insert ‘3(9),’.
( ) In section 52, in subsection (4) (statutory instruments to which affirmative procedure applies), after ‘no regulations under section’ insert ‘3(9),’.
( ) In section 52, in the list in subsection (10) (requirement to consult), after ‘section 1(11)’ insert—
‘section 3(9);’”.
This amendment is consequential on Amendment 4 and produces the result that the regulation-making power conferred by the provision inserted by that amendment will be subject to the affirmative procedure in Parliament and to a requirement to consult such persons as the Secretary of State considers appropriate before the power is exercised.
Clause 2 stand part.
Clause 3 stand part.
Amendment 7, title, line 1, leave out from beginning to end of line and insert
“Make amendments of the Human Tissue Act 2004 concerning consent to activities done for the purpose of”.
This amendment replaces much of the existing long title so as to introduce reference to the making of amendments of the Human Tissue Act 2004.
Mr Robinson
I am pleased to be serving under your chairmanship, Mr Wilson, as I am sure the whole Committee is. I think the sensible grouping of the amendments within the clauses will allow a natural flow, and yet if anybody among the very committed members of the Committee wishes to speak they will have an opportunity too. The idea is that it should not be a long Committee. We had a very good debate on Second Reading and we had the money resolution last night. The support for the Bill at those debates made it clear that the whole House now wants to see the Bill made law and for that reason we want to make progress as fast as we can.
Amendment 1 replaces the word “relevant” with the word “permitted” in clause 1, line 16, as the Human Tissue Act 2004 creates a new term, not already defined, to ensure that deemed consent will apply only in respect of “permitted” material. It is unlikely that many members of the public appreciate the vast scope of organ and tissue transplantation. I hope that this amendment will build on the public’s trust in the system and avoid unnecessary distress to the friends and family of the deceased if the new arrangements were also to cover novel transplants. In the debate on the money resolution yesterday, we went to lengths to stress the need to keep public confidence, as people need to be clear about what is in the Bill; I have heard some rumours circulating already that were not helpful. I think amendment 1 provides a clear distinction and we will be able to define “novel transplant” elsewhere in the Bill.
Amendments 2 and 3 make consequential changes to clause 1, again replacing the word “relevant” with “permitted”. The three amendments create an important distinction between “permitted material” and “relevant material”, which enables novel forms of transplantation, such as of faces and limbs, to be exempt from deemed consent. That underlines the point about maintaining public confidence in what we are doing.
It is imperative that the amendments are made to the Bill to ensure that consent is considered to be in place only for organs and tissues that are in line with the public’s perception of donation. I am sure we all understand the need for that. The term “relevant material” is defined in section 53 of the Human Tissue Act 2004 and is applicable to other activities in the Act.
Amendment 4 provides the definition of “permitted material” that falls within the Bill. The amendment creates a power to make a statutory instrument to set out in detail which organs will be excluded from the new approach. There can be no doubt where we stand—what is included and excluded—and that is all necessary for the public’s reassurance. I am sure we all agree that this should be established by a statutory instrument subject to the affirmative procedure, which by its very nature extends to the proposed list, or any additions or changes to it, rigorous debate and a vote if necessary.
Amendment 5 is consequential on amendment 4 and provides clarification that the provision set out in section 10 of the Human Tissue Act 2004 refers only to excepted adults. It is quite clearly defined in the legislation. Amendment 6 provides that the SI set out in amendment 4, on novel transplants and innovations to be excluded from the new approach to organ donation, will be subject to the affirmative procedure.
I think that covers quite a chunk of the Bill. I invite the Minister to comment on the last part of it. It would be a very happy responsibility.
Peter Heaton-Jones (North Devon) (Con)
It is a pleasure to serve on this Committee. I start by paying unequivocal tribute to the hon. Member for Coventry North West for his stewardship of the Bill. There are many others who have played a significant role in getting us to this stage, and it is testimony to the fact that the Bill has received literally all-party support that the names of signatories from all seven parties represented in the Chamber appear on this private Member’s Bill. The fact that the Front-Bench teams of both Her Majesty’s Opposition and the Government support it is extremely significant. It shows the widespread support, and how important the measure is. It is truly a cross-party endeavour.
I share the hope that has been expressed that Committee stage will not take long, because there is such unanimous agreement. I will briefly share a story that I had the privilege of telling when we debated the Bill in the Chamber back in February, because it is very significant. I recognise that doing so will perhaps bring back some difficult memories for those involved, but I hope it will be inspiring. It is the story of Keira Ball.
Keira and her family were involved in an accident on 30 July last year. There was a road traffic collision on the A361, the North Devon link road in my constituency, only about five miles from my home. Sadly, despite the best efforts of the emergency services and paramedics, young Keira passed away two days after the accident. Her mother and brother were very seriously injured, leaving her father to take on his own the agonising decision that he wanted his daughter’s death to give life to other people, and therefore that young Keira’s organs should be donated. In that inspirational moment, Keira’s parents, Joe and Loanna Ball, have given hope to so many more people. They have also given life to the Bill and seen it get as far as it has. I hope it will proceed without much further ado.
Four people are alive today because of the decision taken by Keira Ball’s father after that accident. Keira donated her kidneys, heart, liver and pancreas. One of her kidneys was given to a man in his 30s, who had been on the waiting list for two and a half years. The other kidney was given to a woman in her 50s, who had been on the waiting list for nine and a half years, and a young boy received Keira’s pancreas and liver. Keira’s heart was given to a 10-year-old boy, who in many ways, has become the figurehead of the excellent campaign. I speak of course of Max Johnson, who is alive today because of the brave decision made by Keira’s father in the aftermath of that awful accident. This is, in many ways, Max’s law and Keira’s law.
Those two young people are an absolute inspiration and show why this excellent Bill, which I hope will become legislation before long, will genuinely help to save lives. For that reason, I am delighted to be serving on the Committee and to be a part of this excellent Bill’s truly cross-party support. I hope that we can move forward so that it reaches the statute book, because if there is one important job that we should be doing in this place, it is saving lives, and that is what the Bill does.
Tonia Antoniazzi (Gower) (Lab)
I welcome the amendments described by my hon. Friend the Member for Coventry North West, to whom I am grateful for taking this important Bill forward.
As the only Welsh MP serving on the Committee, I can speak from experience about the positive difference that a similar law is making in Wales—I am glad to see a Welsh Labour Government leading the way. More and more families than ever before are talking about organ donation, and the importance of talking to families about organ donation was highlighted when, sadly, we lost my father nearly seven years ago. My family’s highest priority was the conversation about organ donation.
Since 2015, when the Welsh Government’s presumed consent law was introduced, there has been a big increase in the percentage of families who feel that they can say yes at an extremely difficult time, honouring the wishes of loved ones who wanted to donate their organs after death. The figure was 58%; it has now increased to 70%. To put that in context, the number of families in England giving permission for the organ donations of their loved ones has not increased during the same period. Hundreds of families in England are still vetoing transplants even when their loved ones have opted into the organ donor register.
The Bill will hopefully spark a cultural change in England as a similar law has done in Wales, but the legislation needs to go hand-in-hand with a public awareness campaign that asks people to have the conversation; that is what happened in Wales. I welcome the cross-party support for the Bill.
Julie Elliott (Sunderland Central) (Lab)
I thank you Mr Wilson, as well as my hon. Friend the Member for Coventry North West, who introduced this private Member’s Bill, and I take pleasure in the cross-party support for the Bill.
There is no doubt that the Bill will make more organs available for transplant, which, as many people here know, is a very personal issue to me, as my daughter is on the kidney transplant list. Only if more organs are made available can lives be both changed and saved. We must always remember those who donate their family members’ organs, because that is such an act of selflessness. Having spoken to many donor families, seeing that lives are saved or improved by doing that hopefully gives them some comfort in what must be the most horrific of circumstances.
I draw the Committee’s attention to a couple of important points. For the Bill to work, there must be an appropriate public information exercise, there must be education, and there must be a triggering of conversation in families, workplaces and schools, about the issue of transplantation. It is a very real issue that can affect anybody, in any walk of life, at any time. Only by talking about the issue openly do people gain a real understanding of what others want and realise that there is nothing to be frightened of in transplantation. Adequate time and resources must be given to the health service and other bodies for the Bill to be implemented properly and successfully—it is important for all concerned that that happens.
I will not go on any longer because there is cross-party agreement. It is very positive when a measure passes through the House and there is genuine cross-party agreement for improving the quality of lives and, literally, making the difference between life and death of people in this country.
Bim Afolami (Hitchin and Harpenden) (Con)
It is a pleasure to serve under your chairmanship, Mr Wilson. In my brief remarks, I will first pay tribute to the hon. Member for Coventry North West, to the Minister, and to the Government and all parties for working together in this way, as has been described by many Members on both sides of the Committee.
Caroline Flint (Don Valley) (Lab)
It is a pleasure to serve under your chairmanship, Mr Wilson, and to be part of this historic occasion. I pay tribute to my hon. Friend the Member for Coventry North West, the Minister, and the cross-party collaboration that has ensured we can today wish the Bill a successful journey towards becoming law.
It is important to say that the Bill is not about taking away choice. Even though it is significant and historic, following the good work done in Wales, the Bill will mean that people will still have a choice. Opting out will be simple and easy, and the views of family and friends will not be dismissed, but importantly—I say this as someone who has been an organ donor for most of her adult life, as well as a blood donor—we have to answer the question, “If one of us, or one of our loved ones, were in need of an organ transplant, would we want to have it available to us?” I think we would unanimously say yes. If that is the case, we have to ask how to make sure that chance is available.
I have been struck by the campaigns outside of the House, including the Daily Mirror’s “Change the Law for Life” campaign and the support of Kidney Care UK, the British Heart Foundation and the British Medical Association. All have done their bit to make this issue so important and put it in the public sphere, but for many of us, the personal stories have had the most impact. I will cite two: the first is that of Amie Knott, from Thorne in my constituency, whose brother Andrew sadly died waiting for a transplant. She has been in touch with me and other hon. Friends across South Yorkshire to get support for the legislation, but she has not stopped there. She is continually out and about in Thorne, Doncaster and beyond, trying to encourage people to sign up to the organ donor register. I pay tribute to her.
When I took part in a television programme earlier this year, one of the guests was a mum whose very young daughter had died, and who had made the very important decision to allow her daughter’s organs to be provided for transplant. It was not an easy decision, but she said, “I had to ask myself the question: if it was the other way round and I was a mother with a child in need of a transplant, would I want that to happen? At this very emotional time, trying to cope with all my feelings and my hurt and anger at losing my daughter, how could I do something positive, or allow something positive to come out of this sad situation?” That probably echoes many of the conversations we have with family, friends and constituents.
I sincerely hope that we can ensure that the Bill is on the statute book as soon as possible. However, as my hon. Friend the Member for Sunderland Central said, the talking must not stop. People can go on the register today or tomorrow, but the talking must take place within families as well. Too often, when people signed up to be on the register, that conversation did not take place, and on too many occasions families dealing with the tragedy of losing a loved one override their loved one’s wishes. Let us ensure that the conversation does not stop with proceedings today, and certainly does not stop when the Bill becomes law. I commend everyone on the Committee and beyond for the positive contribution they have made.
Jim Shannon (Strangford) (DUP)
It is a pleasure to serve under your chairmanship, Mr Wilson. As the Democratic Unionist party’s spokesperson on health, I add my support to the hon. Member for Coventry North West, who has endeavoured courageously to push the Bill through. Every one of us is greatly impressed by him. I put my hands on his shoulders last night and said, “You’re making history tomorrow, boy.” We are all pleased that he is able to do that.
I am also pleased that the Minister responded right away in a positive fashion and ensured that the Bill would become a law, through Government support. Today, as happens often in this House—we could probably see it happen a wee bit more, if we are honest—we can all work together collectively to change lives and make things better. It is important for me. The hon. Gentleman asked me if I would be on the Committee, and I was more than happy to do so, to add my support in a small way to the legislation coming forward.
Why is this important? Every one of us has told a story, and we do that because those stories shape who we are as individuals. I met a wee nephew, Peter, who was born with only one small kidney the size of the wee thumbnail on my hand, so from an early stage he was in need of a kidney transplant. The problem for him was that getting the right donor was difficult. At one time his mother was to be the donor, but then she fell pregnant and that was not possible. As it turned out, another kidney became available in the meantime, and from being the small boy who was not physically able to do much and whose face was—if I can use these words—“custard yella” because of his kidney malfunction, his life was changed. This wee boy loved racing motorbikes and wanted to do a newspaper round but could not do that, and the donation totally changed his life for the better. I was therefore keen to be on the Committee because right away I can see the benefits that will flow from this legislation.
The other story I want to tell is one that a gentleman from my constituency came to tell me. His son was injured in an accident in which unfortunately a lady was killed. Ultimately his son’s life-support apparatus and machinery was turned off. I tell the story because he donated all his son’s organs, which then gave life and improved lives as the organs benefited a number of people.
Before I became a Member of Parliament, I was on Newtownards council, which thought it would be good to create a memorial garden in the council’s area. We therefore have a memorial garden in the main town of Newtownards, where families who have lost someone, or whose family members’ organs have been donated—whatever the case may be—can go and have a wee bit of contemplation or quiet time for remembering. The reason I want to tell these stories is because they are all part of why we need the Bill to go through, and of how important it is for the Minister and the Government to support the Bill promoted by the hon. Member for Coventry North West.
The right hon. Member for Don Valley, who spoke before me, made a compelling point; everybody made a compelling argument. The right hon. Lady made a reference that I was going to make. I am glad that was done and I will do it again. In this House we always repeat things, but that is by the way. It is important that those who feel they cannot go with this can opt out. That is what the legislation does. It does not compel anybody to do anything, but it gives an opportunity. That is the important issue that the right hon. Lady drew attention to, which I wish to endorse.
I have opted to carry an organ donor card since I started driving, and that was not yesterday, Mr Wilson. In Northern Ireland, legislation requires someone to tick a box on their driving licence application to declare themselves a donor. I have been doing that all those years. I still have the wee donor card and the wallet, which is long-time faded, as it has been there for 40-plus years. It is important that we move this forward.
In conclusion, we have a consensus and a collective opinion. We see legislation that can change lives for the better. That is the great pleasure of coming here as a Member of Parliament. It gives pleasure to be an elected representative at any time, be it on a council, Assembly or in the House. To come forward and be part of a legislative change that brings good gives a good feeling. Today is a good day for Parliament. I thank everyone for their contribution, especially the hon. Member for Coventry North West, and the Minister for supporting the measure so enthusiastically. That means something to us all.
Dame Cheryl Gillan (Chesham and Amersham) (Con)
Mr Wilson, it is a pleasure to serve under your chairmanship. I rise to support the amendments in the names of the hon. Member for Coventry North West and the Minister.
I rise only briefly to say that I am a convert. Originally, when I was Secretary of State for Wales, I was not convinced that an opt-out system would be beneficial. I have changed my mind; when the facts change, one should, as a politician, change one’s mind. One of the things that has changed my mind is personal contact with a family where an organ will be needed to save a young man’s life. There is nothing more powerful than having that presented to one as a politician. That means that all of us must have an open mind about so many things.
The way the trend has been going, particularly in Europe, is interesting. I think now more than 24 countries in Europe have some form of opt-out system. Although we have not yet really seen the benefits in Wales of the legislation that came in in December 2015, I frankly think that we need to improve the mathematical odds. We will do so only by creating a culture in which organ donation is spoken about, not in hushed tones or with accompanying difficulty, so that it becomes part of the common parlance.
The testimonies given by other Members in Committee show that the fact that a loved one may go, but parts of that loved one can contribute to saving or enhancing the lives of others, has to be a good thing. I support the amendments and hope the Bill gets a very fair wind so that it becomes law.
The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)
It is a pleasure to serve under your chairmanship, Mr Wilson, and with colleagues across the Committee. Without exception, everyone in the room has been a passionate advocate for organ donation. I am grateful for all the efforts made to promote this important procedure and movement.
With your indulgence, Mr Wilson, I would like to reflect on some of the comments made by members of the Committee before I address the amendments in detail. The Government fully support the Bill and are grateful to the hon. Member for Coventry North West for promoting it. The amendments are a tidying-up exercise and I put my name to them.
Mr Khalid Mahmood (Birmingham, Perry Barr) (Lab)
I thank the Minister for making that point. Under the current system, when people have a donation card, it is still the responsibility of the next of kin to make the decision to donate. In most instances, that decision is not made. Therefore, the value of that card is not upheld.
Jackie Doyle-Price
The hon. Gentleman makes a good point. One of the difficulties in making legislation such as this, where things are put very clearly on the statute book, is that we must have regard to what really happens at the bedside. It is one thing for something to be written in law, but how do relatives losing a loved one in the most atrocious circumstances deal with this? It comes back to a cultural change. The most important thing any of us can do if we want to increase organ donation is ensure that we all have those conversations with our families, so that they understand our wishes. Let us put ourselves in the position of being at the bedside of a loved one who is losing their life. We can put all the support in place—specialist nurses to talk them through the process and so on—but unless families really understand their loved one’s wishes and have had that conversation, naturally the next of kin will be reticent to give consent. One of the great virtues of the Bill and the surrounding campaigns is that we have encouraged people to have those conversations. It has been a real driver of cultural change in that sense.
The hon. Member for Strangford also shared his experience, for which I am grateful, and reiterated that no one would be compelled. Finally, my right hon. Friend the Member for Chesham and Amersham was, as always, wise in her observation that, when the facts change, people should change their minds. It is not a weakness if politicians do so from time to time. I am grateful to all Committee members for their support.
The amendments constitute a tidying-up exercise that essentially make it clear that we are talking about organ transplantation. Their effect would be to remove novel transplants—such as hand and uterine transplants—from the scope of the Bill. The medical advances that allow such transplants are amazing, but in order that the law keeps pace with those developments, we need to make those exemptions and state that we really are only talking about organs. Amendment 7 amends the long title of the Bill to better describe what the Bill will do.
Most points around the Bill have already been made, but I will touch on some of the procedural issues that will flow from it. We expect a rise in the number of organ transplants as a consequence of this legislation, because more organs will be available. We could estimate that, and it could be anything from one to 700, but even one extra life is enough for me. However, I am confident that it will be much more than that. We will also have to put in place the register and the mechanics around it and publicise the changes. Following the Bill’s passage to becoming an Act—touch wood—we are looking at an implementation period of a year before everything is completely nailed down, enshrined and operational.
There has been lots of talk about the role of families. Ultimately, families will clearly wish to have a role in the welfare of a person who lacks the capacity to make a decision after deciding to be a donor. We need a system that takes families with us on this. We are sensitive to people’s faiths and beliefs, and that will all be considered as part of the wraparound care that we will put in place. We will obviously undertake further discussions with the Welsh Government to see how far we can learn from their experiences. By the time the Bill’s passage is complete, we will essentially have the same legal structure across Wales, England and Scotland.
I have talked about novel transplants, and clearly we will have the power to alter the regulations if other kinds of transplantation become possible over time. This legal framework should therefore be future-proof and able to react to changes in medical practice.
The hon. Gentleman ably spoke to the amendments. I do not have much more to say, other than that this is an extremely valuable piece of legislation. As a Health Minister, I have been given a wonderful tool to help us to save lives. It has been an absolute pleasure to work with all Committee members and to achieve this change one way or another. I look forward to seeing the Bill on the statute book. Everybody here, who has fought so much for these measures, can be extremely proud.
Mr Robinson
So many generous words have been extended in my direction that I feel that some redressing of the balance is necessary. I was lucky, and I hope I chose my Bill well. Judging by the support we have had through all its stages, it seems as though there is a groundswell of approval, opinion and acclamation for it, but one thing must not be overlooked, and that is that the Bill would have been very difficult if not impossible but for the support of the Government, including the Prime Minister in person. Throughout this, she has stuck to what she said in Liverpool.
I must also say that there have been tight moments, awkward moments, but the presence of the Minister with responsibility for the Bill, who is with us today, has throughout been one of charm—a smoother who, with her grace, has been able to get us through those moments too. She said it had been a pleasure to work with the Health Committee and it has indeed, and it has been a great pleasure to work with the Minister.
We keep saying these things, but perhaps we should cut down on further compliments to each other until we get the Bill through the Lords. On that basis, we are all in this together and still working hard, because we are not there yet, and who knows what the Lords will throw at us—
Mr Robinson
I think that a little restraint would be a good thing. Thank you very much indeed, Mr Wilson, as always, and the Clerks. I have received excellent briefings—models of clarity—and I advise hon. Members to take a set now, in case they are challenged by any questions in their constituency work or anything like that. The briefings deal clearly with a lot of the most difficult issues. Again, Mr Wilson, it is a pleasure to serve under you. Thank you.
Amendment 1 agreed to.
Amendments made: 2, in clause 1, page 1, line 19, leave out “relevant” and insert “permitted”.
See the explanatory statement for Amendment 1.
Amendment 3, in clause 1, page 1, line 20, leave out “relevant” and insert “permitted”.
See the explanatory statement for Amendment 1.
Amendment 4, in clause 1, page 2, line 10, at end insert—
“‘permitted material’ means relevant material other than relevant material of a type specified in regulations made by the Secretary of State.”
This amendment defines “permitted material”, which will be used in new subsection (6A) of section 3 of the Human Tissue Act 2004 as a result of Amendments 1 to 3. The definition has the effect that the new provision about deemed consent will not apply in relation to relevant material of a type specified in regulations made by the Secretary of State. “Relevant material” is defined in section 53 of the Human Tissue Act 2004.
Amendment 5, in clause 1, page 2, line 11, after “of” insert “the definition of ‘excepted adult’ in”.— (Mr Geoffrey Robinson.)
This amendment is consequential on Amendment 4.
Clause 1, as amended, ordered to stand part of the Bill.
Clause 2
Consequential amendments
Amendment made: 6, in clause 2, page 2, line 36, at end insert—
“( ) In section 52 (orders and regulations), in subsection (3) (statutory instruments to which negative procedure does not apply), after ‘1(11),’ insert ‘3(9),’.
( ) In section 52, in subsection (4) (statutory instruments to which affirmative procedure applies), after ‘no regulations under section’ insert ‘3(9),’.
( ) In section 52, in the list in subsection (10) (requirement to consult), after ‘section 1(11)’ insert ‘section 3(9);’”.— (Mr Geoffrey Robinson.)
This amendment is consequential on Amendment 4 and produces the result that the regulation-making power conferred by the provision inserted by that amendment will be subject to the affirmative procedure in Parliament and to a requirement to consult such persons as the Secretary of State considers appropriate before the power is exercised.
Clause 2, as amended, ordered to stand part of the Bill.
Clause 3 ordered to stand part of the Bill.
Title
Amendment made: 7, in title, line 1, leave out from beginning to end of line and insert—
“Make amendments of the Human Tissue Act 2004 concerning consent to activities done for the purpose of”. —(Mr Geoffrey Robinson.)
This amendment replaces much of the existing long title so as to introduce reference to the making of amendments of the Human Tissue Act 2004.
Bill, as amended, to be reported.
Organ Donation (Deemed Consent) Bill (Money)
Tuesday 11th September 2018
(5 years, 7 months ago)
Commons ChamberRead Full debate Organ Donation (Deemed Consent) Act 2019 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 12 September 2018 - (12 Sep 2018)
The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)
I beg to move,
That, for the purposes of any Act resulting from the Organ Donation (Deemed Consent) Bill, it is expedient to authorise the payment out of money provided by Parliament of any increase attributable to the Act in the sums payable under any other Act out of money so provided.
I am pleased to say that the Government fully support this Bill, which has been ably promoted by the hon. Member for Coventry North West (Mr Robinson), who I congratulate on his fantastic efforts to build cross-party support for this significant piece of legislation, as evidenced by the attendance this evening, well past home time.
Mr Geoffrey Robinson (Coventry North West) (Lab)
I thank the Minister for her kind words. I say right from the start that she and the Government have been an invaluable asset in getting the Bill to this stage. It has been supported throughout the House of Commons, and I was delighted with that. All the party leaders in this place have supported it. I must pay tribute to the tremendous support that I have received from the office of the Leader of the Opposition and from my right hon. Friend the Leader of the Opposition himself. All that taken together—plus the Prime Minister’s considerable personal support—means that we can now have a money resolution, which we are delighted to accept. It provides £18 million for an essential public awareness campaign, which is intended to make it clear to the public what exactly the Bill does, why we are doing it and how it will operate. If we lose public support, we have lost everything, so this money will be well spent.
The Government are confident that the other money linked to the programme can be found from their savings and—to give credit here, too—for the first time we have a long-term commitment to funding of £20 billion over 10 years. We should be able to find a share of the other resources we shall need—the increase in surgeons, nurses and facilities—from that and from the savings that the Act itself will bring after the first year of planning, when it comes into operation. The cost of long-term and chronic care for kidney patients is enormous. The savings are therefore real, and we take the Government’s assurance that, together with the money resolution, that will be sufficient for our present purposes.
Having thanked all those concerned and everybody in the Chamber now, I commend the money resolution to the House.
Question put and agreed to.
Organ Donation (Deemed Consent) Bill
Friday 26th October 2018
(5 years, 5 months ago)
Commons ChamberRead Full debate Organ Donation (Deemed Consent) Act 2019 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 12 September 2018 - (12 Sep 2018)
Dan Jarvis (Barnsley Central) (Lab)
I beg to move, That the Bill be now read the Third time.
It has been an immense privilege to be a part of the campaign that has brought the Bill to its Third Reading today. I want to pay particular tribute to my hon. Friend the Member for Coventry North West (Mr Robinson), who has provided real leadership throughout the promotion of the Bill. He and I have sat through many meetings and many committees together. It has been his focus and his determination that has led us to this point where we have today an opportunity to do something very worthwhile. I know I speak for the whole House when I wish him a very speedy recovery from his recent operation.
I want to take this opportunity to pay tribute to other hon. Members who have provided outstanding support: my hon. Friends the Members for Newport West (Paul Flynn) and for Sunderland Central (Julie Elliott), my right hon. Friend the Member for Don Valley (Caroline Flint) and the hon. Member for North Devon (Peter Heaton-Jones), as well as the many other hon. Members, too numerous to mention, right across the House who have worked collectively to get us to this point today. I also want to pay tribute to Trinity Mirror. Its contribution to this campaign has been very significant and I am grateful for everything it has done. In particular, I thank Alison Phillips, Andrew Gregory, Michelle Klepper, Paul Millar and Owen Pritchard for their commitment to this important cause.
In the spirit of paying tribute and giving credit where it is due, I am looking very firmly at the Minister, who has responded in the most sensible, co-operative and constructive way. We have sat in a lot of meetings over many months. She has been an absolute pleasure to work with. The leadership that she has shown has been instrumental in ensuring we have the opportunity to pass this very important Bill today. I thank her and her officials for the important job they have done in getting us to where we are. I am also grateful—and a little relieved—that we can rely on the support of both the Prime Minister and the Leader of the Opposition. I am determined to ensure that we maintain this consensus on Third Reading today and send the Bill safely to the other place.
I want to reflect for a moment on why the Bill is so important. The bottom line is that it will save lives, but it is important to note that of all the people who died in the UK last year, only about 1% died in circumstances that would have made a donation possible, which means that, even though hundreds of thousands of people across the country are registered as potential donors, only a small handful will ever be in a situation that would allow a donation to take place. This is one of the main reasons why today in the UK there are thousands of people waiting for an organ donation and why every year hundreds of people die waiting. This loss of life is devastating, but it is not inevitable. Today we have the most precious of opportunities to save lives and give hope to many. We must not miss that opportunity. Moving to an opt-out system for organ donation, such as the one in Wales, will add thousands of names to the donor register, meaning that once the Bill is passed, hundreds of lives could be saved.
The Bill is not about the state taking control of people’s organs or shaming people into donating. If people want to opt out, that is absolutely fine, and I am entirely respectful of any decision, for whatever reason, so to do. No questions will be asked and there will be no hard feelings. Instead, the Bill is about making it easier for those who might wish to donate to do so. The current system requires people to take the time to discuss this most serious and difficult matter with their loved ones in order to reach a judgment about whether, in the event of some tragedy occurring, they would want their organs to be donated. It is incredibly important that, if people feel able to have that conversation with their loved ones, they do so. Many of us are guilty of not having had them and of putting this important task on hold. I believe that we can no longer afford to ignore this issue, that we must seek to increase the number of people on the donor register and that we must save as many lives as we can, and I believe that the Bill is an important way to do that.
That said, I acknowledge that the Bill is only part of the way to increase the number of people willing and able to donate their organs, so, in concert with the Bill, it is important that we also have an open discussion with our families and in our communities about the importance of making a contribution in this way.
Justine Greening (Putney) (Con)
I am very supportive of the Bill. It could be transformative in helping to save lives in our country. Does the hon. Gentleman agree that these conversations should be had in school so that children grow up understanding the role they can play in helping to save people’s lives and so that we encourage young people from an early age to think about becoming organ donors? The power of inertia he is talking about can make a big difference for good.
Dan Jarvis
The right hon. Lady makes an important point. None of us who is here to support this Bill believe that it is in its own right a silver bullet that will solve the problem we are encountering; it is not, and therefore it needs to sit alongside some very important conversations on difficult issues. Many of us will potentially feel uncomfortable about having these conversations, but the right hon. Lady is correct: it is important that from the earliest possible opportunity we have these conversations with our loved ones so they are absolutely clear about what we would wish.
That point reinforces that, in addition to the Bill, all of us who believe in the value of organ donation should seek to ensure that as many people as possible come forward to register as organ donors. This Bill serves as another important opportunity to raise the profile of that issue and provides a platform for us to be having these conversations with our loved ones. As leaders within communities, we have a responsibility and an important role to play in seeking to encourage people to have those conversations.
Time is short and I do not intend to detain the House for much longer as I am keen to make progress with the Bill, but I do want to take this opportunity to say a final word of thanks to Max Johnson, to Max’s mother Emma and to the whole Johnson family. Many Members will recall that Max is the 10-year-old who fronted the Daily Mirror campaign on organ donation. He is an exceptional young man. He was kept alive by a tiny metal pump that was in his chest for seven months. I am absolutely delighted that, after finally receiving a heart transplant, Max is doing well. He has been given a chance to live a relatively normal life because of a donation made by a donor, Kiera Ball. I believe that Keira Ball and her family should serve as an inspiration to us all, and I would like to take this opportunity to make a request—I am sure the hon. Member for North Devon (Peter Heaton-Jones) will be happy to do this—that our collective thanks are passed on to the family of Keira Ball for their bravery and dignity and the example they have set. It has been an inspiration to us all, and I want to personally extend my thanks to the hon. Gentleman for the dignified way in which he has represented his constituents over a number of debates in this House.
Quite simply, we are here today to save lives—to save the lives of people like Max, but also of thousands of other people who would benefit from the change this Bill sets out. We have a rare opportunity at our fingertips to make this powerful and meaningful change. I hope very much that we do not miss the opportunity to save lives and that this Bill goes forward; I hope hon. Members will support the Bill.
Matt Warman (Boston and Skegness) (Con)
I begin, as I suspect many will, by paying tribute not only to the hon. Member for Barnsley Central (Dan Jarvis), but of course to all those he mentioned who have played such an incredibly important role in bringing this Bill so close to, and I hope by the end of the day on to, the statute book. This is a piece of legislation whose time has come, because we live in a society that is less religious than ever before and we are ever more aware of what good medical science can do. It is of course vital that we respect the wishes of those who do not want their organs to be donated, but it is also vital that we have a conversation about the good that organ donation can do. I particularly agree with the hon. Gentleman’s central point that this is not a panacea or a silver bullet. It is a surprisingly small part of the conversation that we need to have, now more than ever, about what organ donation can mean for the people who need those organs so much.
As my right hon. Friend the Member for Putney (Justine Greening) said, it is right that we are beginning to have this conversation in schools, and it needs to be surprisingly detailed. Many people whose consent will now be presumed will not realise that their presumed consent applies not only to internal organs but to corneas, for example, and to other parts of the body. Some people will find that genuinely invasive, even though the donation of those parts would do a huge amount of good. This is one of the many reasons why this Bill’s time has come.
People who wish to opt out must have a conversation with their doctor and with their family, so that when the time comes, the information that they have opted out is known, understood and easily accessible. I was hugely envious of the progress that has been made on this in Wales. It is inevitable that the family of someone who went on to give their organs and make a huge a difference would be profoundly unhappy if it later came to light that the person had expressed a wish, which had not been discovered, that their organs should not be donated. This is an immensely complex area, and the Bill provides as many opportunities as possible to opt out in a sensible and informed way. We also need to ensure that, if those opportunities are taken, they are known about and understood, because time is often of the essence when it comes to taking organs and ensuring that they do all the good that they can.
There will be a huge burden on the Human Tissue Authority to ensure that this works as well as it possibly can, because it will be the regulator for this scheme. This is a challenge that we have not faced before, and I know that the HTA is confident of the good that it can do, but we should be careful not to put doctors in the difficult position of being asked to take advantage of the legislation. There will now, I hope, be deemed consent, but it will ultimately be down to the doctors to make the call on whether to proceed.
Sandy Martin (Ipswich) (Lab)
Does the hon. Gentleman agree that one way to ensure that there are not misunderstandings is for everyone who is concerned about organ donation to discuss it with their nearest and dearest so that they all know that the person is happy to have their organs donated?
Matt Warman
I absolutely agree with the hon. Gentleman. This is all part of the broader conversation that we need to have. None of us wants to be in this position. We would all like everyone to have signed up to the organ donation register because they had already had that conversation. Given that we are where we are, however, the more people who have those conversations, the better.
There will be an increased burden on doctors as a result of this provision, not in workload but in decision making. If they have not been able to locate evidence of an opt-out, they will still have to be sufficiently content that they may take those organs that will be so important to others. We should be careful that the presumption of consent is not interpreted as a compulsion on a doctor to take organs. Of course doctors will not behave rashly; we know that they will be considered, cautious and sensible, not only because of the regulatory regime but because they would never seek to upset either the deceased or their family and friends in this situation.
I should like to conclude where I began, by saying that these are immensely complex matters and that this is not a panacea. It should be the beginning of a conversation to make more and more people aware of the huge good they can do, whether by donating corneas or kidneys. Such donations can now make a profound difference to multiple people, and even in moments of extreme sadness, families and friends can do a small amount of good. This Bill enables not only those individual operations, but hopefully a far broader conversation that will allow us to say that great good can be done and that presuming consent is the right balance and that, in the context of that broader conversation, we can ensure that people do opt out where necessary.
I commend this Bill and commend the bravery that some have shown in getting it through the House, because there is sensible and legitimate opposition to some aspects of it. I hope that the Bill will mark a serious bit of progress and will make the difference that everyone here hopes will be made to so many lives. In collaboration with the regulators and the medical profession, I hope that we can strike the right balance to get the maximum benefit and do not inadvertently cause pain and distress to people who are placed in a position that they would never wish to be in.
Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)
I thank and congratulate my hon. Friend the Member for Coventry North West (Mr Robinson) on introducing the Bill and on the constant campaigning that has led to the Bill reaching its final stages. As we heard from my hon. Friend the Member for Barnsley Central (Dan Jarvis), my hon. Friend the Member for Coventry North West is unable to be with us today, so I wish him well and I am sure that the whole House will want to wish him a good recovery. I thank my hon. Friend the Member for Barnsley Central for so ably standing in for today’s final stages and for his many years of campaigning, and I thank the hon. Member for Boston and Skegness (Matt Warman) for his thoughtful contribution.
Many hon. Members have brought this issue to the House over the years, and I want to pay tribute to my hon. Friends the Members for Mitcham and Morden (Siobhain McDonagh), for Newport West (Paul Flynn) and for Sunderland Central (Julie Elliott) and, again, to my hon. Friend the Member for Barnsley Central. I also commend the Daily Mirror on its sterling work, its awareness-raising campaigns and especially for supporting the case of Max Johnson, then a nine-year-old boy badly in need of a new heart. Thankfully, Max got a new heart due to the bravery of the family of Keira Ball, his donor, and it was great to hear from my hon. Friend that Max is doing so well.
There is no doubt that we need more organ donors in England. As of 19 October 2018, a total of 6,198 people were registered on the active waiting list for a transplant, with 285 of them needing a new heart. That is why I am proud to support this Bill, which will hopefully help to deliver an increase in the organs available for donation and shift social norms towards donation.
The gap between the number of organ donors and patients requiring organ transplantation is higher in black and minority ethnic communities than in the general population. Earlier this year, I sat on a panel with my hon. Friend the Member for Wolverhampton South West (Eleanor Smith)—I am pleased she is here today—and my right hon. Friend the Member for Tynemouth (Mr Campbell) to review BAME blood, stem cell and organ donation and to hear real-life stories of why more organ donors are needed for these communities.
It is important to recognise that the campaign to increase organ donors will not end with this Bill. We need a comprehensive communications strategy that can reach everyone, but especially those who may not already be convinced by the call to be an organ donor. Will the Minister commit to working with Public Health England to establish a national media campaign to raise awareness and enable people to make an informed decision on organ donation? Any media campaign should be followed up regularly, to ensure that the message is spread far and wide. We will also require investment in health structures, including the workforce, to maximise the potential of a soft opt-out system. Will the Minister consider increasing the number of organ donation specialist nurses, so that families can be supported in their decision?
In closing, this Bill is so very important, but what happens next is crucial. Just one donor can save up to nine people and give them a future with their loved ones. That is why we need any future system to be supported by a national media campaign and increased resources for our healthcare structures, so that everyone has the information they need to make an informed and important choice.
Victoria Prentis (Banbury) (Con)
It is always an immense honour to follow the hon. Member for Washington and Sunderland West (Mrs Hodgson). I associate myself with everything she said.
I have been asked to speak on behalf of one of our colleagues. My hon. Friend the Member for Eddisbury (Antoinette Sandbach), who cannot be here, is Max’s MP and she has asked me to say that Max has been inspirational to everybody, both locally and nationally, in fighting for change and that his work has been remarkable. As a nation, we need to understand how important the gift of organ donation is to others. Max has demonstrated how valuable that gift is.
Eddisbury is in an area of the country that was affected by the Alder Hey scandal, and my hon. Friend says that we must not fail to take into account the lessons of the past and that those affected by Alder Hey need reassurance that appropriate safeguards are in place. The wishes of the family must always be paramount. Without safeguards, the work of the Bill risks being undermined by people opting out. My hon. Friend is keen that we work together to ensure that the positive benefits of donation are made clear so that lives may be saved.
I am happy to act as a mouthpiece for my hon. Friend, because I, too, approach this Bill with the scars of my involvement in previous inquests. I was partially involved in the Marchioness inquiry. Horrific acts were carried out on the bodies of those who had died. I have always been interested—including, sadly, through my own experience, which we have already talked about this morning—in how we treat the bodies of those who have recently died. It is something that we really do not like talking about in our clean, hygienic society. Many people have never had personal experience of the bodies of the dead, and it comes as a tremendous shock when we do, often in the most dreadful circumstances because it is the person closest to us who we see lying dead.
I, too, approach this Bill with caution, but I pay enormous tribute to another friend on the Labour Benches, the hon. Member for Barnsley Central (Dan Jarvis), for steering the Bill through so sensitively. Those who, like him, have served bravely with the armed forces—or, as in my case, have helped support the armed forces from a safe place in London—have to have these conversations, and we have them when we are very young. It is important that the whole of society can learn from that. They are difficult conversations but they are not impossible. It is important that we get with it and say these things, however difficult it may be to do so.
The medical teams dealing with the recently bereaved family or the dying individual are themselves often traumatised by the experience and may not be the best people to have such sensitive conversations. Whatever else we learn from all the sharing we have done during this morning’s debates, training is key and we must be very careful about the training and support we put in place for hospital staff to be able to have those really difficult conversations.
I will close by speaking on behalf of another colleague who, though present, is not allowed to speak, namely my hon. Friend the Member for Bury St Edmunds (Jo Churchill). She has asked me to mention her constituent Liam Byrne, who is a campaigner. I should say in this context that he has also been a political opponent of my hon. Friend, but she speaks with great passion and vigour about him, and feels very proud of the campaigning he has done. He has received two life-saving liver transplants, and he strongly believes that we need to get on with this Bill and change the law before Christmas. He would like me, as I am the mouthpiece, and my hon. Friend to make it clear that time is not an option for people who need these organs.
Kevin Foster (Torbay) (Con)
It is always a pleasure to be called to speak in a debate with you in the Chair, Mr Deputy Speaker, and it has been a particular delight to listen to the hon. Member for Barnsley Central (Dan Jarvis), who is moving the Bill’s Third Reading on behalf of the hon. Member for Coventry North West (Mr Robinson), with whom I share two things. Clearly, we do not share a political party, but we support both Coventry City football club and his excellent Bill, which he has diligently pursued through the House. It is a compliment to his skills that he has managed to secure such wide-ranging support across the House, and in a very sensitive area. I know that for Government Members this would be a free vote issue and I believe the same would apply to Opposition Members, given the issues it touches on. The fact that he has skilfully managed to assemble such a broad ranging coalition of support is a tribute to him, as is the work that has been done to assuage the genuine concerns some people have about this.
I am quite a religious person, and Members will know from some of my previous speeches the role I play in my local church. This Bill does not raise any issues for me, but I respect the fact that it does for some groups out there. I suspect that many Members will not have seen the reassuring email that has come into my inbox while we have been in the House today from the Board of Deputies of British Jews, forwarding a letter from the Minister setting out a number of reassurances and making it clear that the Board of Deputies is reassured by what has been said and does not see a reason for any objections on the grounds of its faith.
We are calling this Bill the Organ Donation (Deemed Consent) Bill, but we could just as easily call it the “Birthday someone is going to be around for Bill”, the “Job that will be kept Bill”, the “School that will be started Bill”, the “Grandchildren who will be seen Bill” or “The father or mother who will get to see their son or daughter graduate Bill”, because that is ultimately what this is about. In this debate, it is natural that we can sound as though we are just talking about anatomy, and I will probably sound as though I am doing that in a minute. It can sound as though we are talking about bits in our bodies being transplanted into someone else, and we can go through the list of things. The reality is that the benefit of transplants and making more organs available is that this gives people back their life or saves their life. We are talking about the person who no longer has to go for dialysis and is able to do other things with their life. We can keep such people alive but once they have been able to have their transplant, they are able to move on. So this Bill is very welcome.
I am clear that this Bill would not force anyone to have their organs transplanted against their stated will—that will not happen. Even if someone did not know about these provisions, protections have been well crafted by the hon. Member for Coventry North West, working together with the Government, that provide reassurance to anyone and any family who might have a concern that that would take place. It was a delight to serve in Committee where this was explored in some detail. It was made clear that people could provide evidence on what the person’s views would have been; clear evidence could be provided showing that they were part of a particular religious group or movement that has an objection, or showing that they had raised their objection. For me, this is therefore very clear.
It is also clear that this Bill is not about taking organs from those who would lack the capacity to make that choice for themselves; clear protections are in place that would be available in respect of those who would not genuinely understand the provisions and what this Bill would mean. So for me, the Bill is welcome.
Just before I was elected, there was a well-known campaign in Torbay called the Green Star Man campaign. A chap dressed up like a superhero and went around hanging stars around the bay, and he tried to get people talking about what it was all about. He did not tell anyone until the great reveal. He had hung them off a palm tree and the town hall, and I think my predecessor, Mr Sanders, brought one up to Parliament and sat out on the Terrace with it to make it look like it had been hung here. I give him credit for supporting that campaign. It was all there for the big reveal, which was that the stars were the people who became organ donors. This chap was motivated by the experience of his daughter, who had needed a transplant, and by the fact that someone could give the gift of life when they could no longer give any other gift or make any other gesture like it. It is such a special and unique gift.
One key thing that drives my support for the Bill is that currently the conversation about organ donation comes up at what will be the darkest time in a lot of people’s lives. It will normally be in the case of a surprise or sudden death. Let us be candid: that is particularly true for those most likely to be candidates for organ donation—people in their 20s, 30s and 40s—who may have had no comprehension that something was going to happen to them. This sort of discussion will bring up some difficult memories, even for some Members present. To be sat down at that moment to have a conversation about organ donation is one of the most difficult things for anyone to do. The doctors need to do it at that time, but the Bill will rightly change the perception, and it will be done only if there is an objection. That will make the conversation at that moment easier.
I was lucky. I can remember when I was 13 and my grandfather had just died. My grandparents were getting older and my father sat me down—I did not think anything of the conversation at the time—and told me his views on organ donation and that if ever I was asked, I should say yes. My mother did the same shortly afterwards. Years later, they revealed why they had done that: their parents were getting older—my mother had lost both her parents by that point and my father’s parents were just about to turn 80—and they realised who it was who was likely to have to have that conversation if something happened to them. It would no longer be their parents, and it would probably be me. They felt that if I, as a 16, 17 or 18-year-old, was suddenly presented with that choice, it would be immeasurably harder for me to make it if I did not know what they thought. Knowing what they thought would make it much, much easier. They also shared one or two other thoughts about medical treatment in extreme situations.
I benefited from that conversation, but not many people find it an easy conversation to have, particularly if we think of someone talking to potentially teenage children about the fact that they may be presented with a situation in which their parents are in a desperate state medically and, if the parents’ views are not fully known, it might come to them, at 18, to make the choice about what happens. The Bill will make that process much easier and much simpler. That is very welcome and will have a genuine benefit in expanding the number of organs available for donation.
The provisions of the Bill cover off any technical concerns that any Member may have. Indeed, this is already the law in Wales. It has not caused particular problems in Wales and we do not see many people there raising huge objections to it. We have not seen huge demonstrations since it came into law there. I have absolutely no reason to believe that the implementation of these provisions in Torbay will be any more difficult than the implementation of the change was in Torfaen. The practical effect on the ground is there to see. Members who represent Welsh constituencies have certainly not come into the Chamber to argue that the change has been a problem. In fact, it is quite the opposite: they have come into the Chamber and made it clear that they welcome the fact that England and Northern Ireland will now go down the same path.
For me, this is a welcome and timely Bill. It is also one of the few occasions when, as a Conservative MP, I will stand up in the House of Commons and praise the Daily Mirror. It is not usually my favourite newspaper—I have been in it a couple of times and it has not normally been positive—but it deserves credit for this campaign because many ordinary working people across the country, the very people the Mirror likes to give a voice to, will benefit.
Mr Khalid Mahmood (Birmingham, Perry Barr) (Lab)
The hon. Gentleman is making an impassioned, fantastic speech. I do not know if he is aware that I have had a transplant. It came from a friend, a live donor, rather than from a deceased person. A transplant is hugely important to people who are on dialysis due to kidney failure, like I was, because of the pain they go through, what their families go through and the huge amount of care it takes, quite apart from the cost that is incurred by the national health service. That is why this measure is important and why it is working in Wales. I thank the hon. Gentleman for his contribution. Does he recognise that the old system required the consent of the next of kin, which is the difference that we are talking about today?
Kevin Foster
I genuinely thank the hon. Gentleman for that intervention. For many people, it will be inspiring to see a Member of Parliament who has benefited from a transplant playing a full part in our parliamentary proceedings, passionately representing his constituents and passionately serving his community in Birmingham. That is what this is about. I could have added to the start of my speech that this is the “Carrying on as an MP Bill”. Such examples are so important.
The hon. Gentleman is right that the issue is the consent of the next of kin. Although I can understand why that was the original process, I have always taken the view that if someone has expressed unconditionally that they wish to be an organ donor, that should be final. I have expressed that wish and it will now be on the record in Hansard. I hope nothing does happen, but I have said that even if my wife was presented with the choice, my view would be the final view.
The hon. Gentleman is right that people are not asked for their consent at a nice time when they can go home, have a think about it and then come back and have a cup of tea when everything is going great. It probably happens after they have received a phone call to tell them that their loved one is very unwell. They then get to the hospital and are sat down, and clearly the conversation is a very difficult one. It is then that the next of kin is asked to make the choice. For some people, it provides a bit of comfort at that moment that at least something good has come of the situation. Many people take at least some satisfaction in the fact that, despite what has happened to their loved one, they can still do something positive. However, for most people, it is not the easiest time to make that decision. The Bill will turn that around and make it easier.
Hopefully in future debates on this issue, more Members will be able to do what the hon. Member for Birmingham, Perry Barr (Mr Mahmood) has done and demonstrate exactly how transplants change lives, whether from living donors as in the case of his kidney transplant or from someone who has made the most special gift that they can make once they can give no more. It literally means people carrying on with their jobs, carrying on with their lives and still being there for their loved ones and their families, just as the hon. Gentleman is doing today in this House. Again, I thank him very much for his intervention.
A member of my office has recently had a transplant. I will not go into the details, because I am conscious that they are a member of staff. They are now in the process of coming back to work. We have certainly seen a great difference in them. They are looking a lot better, a lot fresher and a lot keener. Their view is that they have got their life back. Our thanks go to the family who made that difficult choice. There were occasions when the staff member concerned had to go up, only to find that an organ was not suitable. Finally, I think on the third occasion, the organ was suitable for transplant.
I have seen lives turned around and changed, and we will see more of that because of the Bill. It is genuinely a Bill that will save some of our constituents’ lives. Over the next few years, I doubt there will be a single constituency in the country that does not see at least one person have their life turned around by the provisions of this Bill.
The hon. Member for Coventry North West has been in the House for an incredibly long time, during which he has been in the Government and held numerous positions. Whenever he finally decides to retire, I suspect that he will rightly take the most pride in this Bill. I can genuinely say that it will be viewed as one of his legacies, and I am sure that the hon. Member for Barnsley Central (Dan Jarvis) is pleased that he has been able to play a role in bringing it to the House today.
I am conscious that I have now been going on for about 15 minutes, and I do not plan on trying to break one of my Friday records—not least given how much I support the Bill. I am pleased to have seen the general support in the House and to have had the chance to say a few words in support of the Bill. I very much look forward seeing it pass its Third Reading in the very near future.
Julian Knight (Solihull) (Con)
It is a great pleasure to follow my good and hon. Friend the Member for Torbay (Kevin Foster), who made a typically thoughtful, telling and long contribution.
The question of organ donation, as with so many debates about what the Government can tell us to do with our bodies, can be contentious. There are deeply held beliefs on both sides of the debate. A move towards a system of presumed consent is exceptionally worth while, but the right to opt out must be clearly and consistently protected at every stage. There are three factors to consider: first, is there a clear need for the Government to pursue an increase in donations; secondly, does the available evidence suggest that an opt-out donation policy will lead to such an increase; and, thirdly, is such a policy compatible with the private right of the individual citizen to ultimate ownership of their own body?
On the first question, I believe that the only answer is a resounding yes. Every year, hundreds of people die waiting for a transplant and many thousands more languish on waiting lists that create a bottleneck for life-changing—indeed often life-saving—surgery. Even worse is something that I see my own constituency and have raised with the new Birmingham and Solihull clinical commissioning group: black and minority ethnic patients, who are more likely to suffer diseases that require transplants, such as kidney diseases, face an even more acute shortage due to lower take-up of voluntary donation among their communities. Such insufficiencies and inequalities demand that we address them in whatever way we can.
It was a great pleasure to see my good friend the hon. Member for Birmingham, Perry Barr (Mr Mahmood) in the Chamber and to hear his intervention. I know the circumstances of the individual donation, and the story is even more remarkable than we have heard in the Chamber today. The hon. Gentleman’s vibrancy, which we see day in, day out, is a testament not only to him, but to the medical staff who helped him through the operation.
Of course, there has been a consistent trend of more people opting in under our current regime. Indeed, there are more than 25 million people on the NHS organ donor register, and we thank every single one of them, but it is an unfortunate fact that only a fraction of people die in circumstances that make their organs suitable for transplant—just 1% percent of that 25 million, according to NHS figures. Would a shift to presumed consent address that problem? The available evidence is promising, although not wholly conclusive, but I am willing to go with an act of faith.
Several countries that have moved to an opt-out donation model have seen a rise in donations, including—this is most pertinent to us—Wales, which introduced an opt-out system only recently and has seen increases in both deceased donors and transplants. Countries such as Spain have coupled the approach with other measures, such as heightened public awareness campaigns and an overhaul of the infrastructure underpinning the donation system. That obviously muddies the waters, as does the fact that any uptick in donations often occurs years after the switch to the new system. In some countries, such as Brazil, donation levels have actually fallen slightly after the change to the new system. However, I feel that there is enough positive evidence to suggest that a switch to an opt-in system for England would be very worth while, provided that the rights of individuals to refuse consent are adequately safeguarded.
It is important that the deceased’s family has a role to play. For example, if they are aware of an expressed opposition to donation that was not formally registered with the NHS, I believe that they should have the right to register it. Over the longer term, the right to opt out must be reinforced by robust protections to ensure that doing so remains a simple and easy thing to do, with no questions asked. The hon. Member for Barnsley Central (Dan Jarvis) was very particular about that, which I was grateful to hear.
Individuals who refuse consent should not be subject to any pressure to change their minds or asked at intervals to think again. We must never lose sight of the fact that our bodies are ours, however valuable and useful they might be to others, and that they are not the property of the state in any way.
In summary, I support the Bill. I have considered the evidence, and while it is contradictory in part, we should look at the examples from Wales and Spain. The system should be married up with the correct procedures, encouragement and public information, and an under- standing that it is our body. I believe wholeheartedly that this Bill should be passed and that there should be a fundamental change in this area.
Neil O'Brien (Harborough) (Con)
It is a pleasure to support this important Bill. I grew up in Huddersfield, and Barnsley are our great rivals, but despite that it is a pleasure to congratulate the hon. Member for Barnsley Central (Dan Jarvis) on this hugely important Bill. As my hon. Friend the Member for Solihull (Julian Knight) said, it protects important rights. He made the incredibly important point that our bodies are not for the state. They belong to us, and it is essential that we have the right to say no if we have objections, but I believe that the Bill includes safeguards to achieve that.
The hon. Member for Barnsley Central mentioned the case of Max Johnson, just nine years old, whose life was saved by a heart donation from Keira Ball, who had been tragically killed. I wonder whether I might also mention the Leicestershire case of Albert Tansey, whose life was saved by a heart transplant at the amazing Glenfield Hospital when he was just four years old. The hospital is home to the now saved children’s heart unit, which we have all strongly supported in Leicestershire. Thanks to the miraculous work done at Glenfield, he is now enjoying his ninth birthday, and his family are strongly in favour of the Bill. It has already been said that this could be called the “Getting on with your life Bill”, or the “Being a Member of Parliament Bill”, but it is also the “Enjoying your ninth birthday Bill”.
Although this debate could be rather bleak, there is some good news: 50,000 people are alive today thanks to organ transplants, including the hon. Member for Birmingham, Perry Barr (Mr Mahmood), who is looking very well on it, I must say. The number of people registered as donors is rising—we thank them for that—and the numbers on the transplant waiting list have fallen steadily over the past eight years. However, the Bill is still necessary because some people are missing out. Between 2005 and 2010, some 49,000 people had to wait for an organ transplant, and 6,000 died while waiting, of whom 270 were children. We could save more lives if we had more donations. I am particularly conscious that for some groups, particularly ethnic minorities, it can be particularly difficult to find a transplant. I have seen the good work done by the NHS and visited a temple just north of my constituency to see the outreach work it is doing to try to find more donations, but none the less there is still a big problem.
In 2008, only one of the top eight countries with the greatest number of organ donors per capita had an opt-in system. All the others had opt-out systems, so there is strong evidence that such systems can increase the number of donations. In 2017, we know that 1,100 families refused to allow an organ donation because they were not sure whether their relatives would have wanted to donate. My hon. Friend the Member for Torbay (Kevin Foster) made the important point that asking people to make a proactive decision to donate at an incredibly emotional and difficult moment is harsh and unfair. I think that many families would later come to value the fact that a loved one’s organs had gone on to help someone else to live.
Julian Knight
Does my hon. Friend agree that sometimes in that situation, relatives could make a decision that they later regret, because in the emotion of the moment, they might not make the decision to say, “Let’s go ahead and make the donation.”?
Neil O'Brien
I absolutely agree.
Let us also think about the medical staff who need to have these incredibly difficult conversations. A long time ago, I was a medical student. I remember the first time I ever saw someone who had died and the medical staff’s incredibly difficult conversations with his family in the hospital. Imagine then having to ask the family to make the donation of an organ to save another life. It is almost an unbelievable thing to have to ask people to do.
We know that, since the introduction of the opt-out system in Wales, the number of deceased donors is up from 60 to 74. Those are small numbers, but none the less that is a rise of 23%. It is early days, but the opt-out system does seem to help. Obviously, we need the safeguards that my hon. Friend the Member for Solihull described, but at the end of the day, the Bill will save lives—it is as simple as that.
It is ironic that often on a Friday, when there are relatively few of us here, we talk about matters of life and death. This is one of them. This Bill will save lives. It means more careers, more lives and more ninth birthdays. If I can have a moment of poetry, it is what one poet called the
“million-petalled flower of being here”.
This Bill will save people’s lives, and it is a pleasure to support it.
Peter Heaton-Jones (North Devon) (Con)
The reason that I take a particular interest in this Bill has already been alluded to by many Members on both sides of the House, but I make no apology for rising once again to refer to the story involving my constituent.
Before doing so, may I join others across the House in wishing the hon. Member for Coventry North West (Mr Robinson) all the best in his recovery? In many ways, we would not be this far in the process were it not for him, and I pay tribute to the way he has led the Bill through the House. It has been my pleasure to speak at each stage of the Bill’s passage and to serve on the Bill Committee. I also thank the hon. Member for Barnsley Central (Dan Jarvis) for his kind words, which I will pass on to my constituents.
It is to them that I turn now and the story that has been alluded to but is worth retelling. If there is anything about this Bill that we need to keep in mind, it is that it is about people—it is about individuals, it is about saving lives and it is about the double-edged sword of a life being saved, but for that to happen, a life has to tragically be cut short. It is one such life that I wish to retell the story of.
On a Sunday morning last year on 30 July, there was a road traffic collision on the A361, otherwise known as the north Devon link road. It happened only about five minutes from my constituency home. Tragically, we had four fatalities on that short stretch of road in the space of a week. To go off slightly left-field, I am delighted to say that since then, because of persistent campaigning by many people, the Government have granted £83 million for major improvements on the road, mainly because of the safety concerns and the poor accident rate on that particular stretch.
Last summer, an accident took place involving two vehicles. Occupants of both were seriously injured. Before going any further, it is worth recognising that those who survived this accident are still living with its aftermath, and my thoughts remain with them nearly 18 months on. One of the cars involved in the accident was carrying members of the Ball family from Barnstaple. There was Keira Ball, her younger brother Brad and their mum Loanna. The paramedics, the emergency services and the NHS staff at the four different hospitals that the victims of this accident were taken to all did their best work, but sadly, young Keira Ball passed away two days later on the Tuesday afternoon. She was just nine years old.
Keira’s mother and brother were very seriously injured in the accident, and they were in hospital. They were not able to make decisions at this time, so the agonising decision came down solely to Keira’s father, Joe. He took the decision—and what a brave and courageous decision it was in these circumstances—that, in the midst of this tragedy, he wanted the life that had just been so cruelly taken away from his young daughter Keira to be given to somebody else, so he took the decision that Keira’s organs should be donated.
Following that brave decision, four people are alive today who otherwise almost certainly would not be. This is the power and the strength of organ donation, and this is why it is incredibly important that we get this Bill on to the statute book today: it is about these people. Keira donated her kidneys, her heart, her liver and her pancreas. One of her kidneys was given to a man in his 30s who had been on the waiting list for a transplant for two and a half years. The other kidney was given to a woman in her 50s, and she had been on the waiting list for nine and a half years. A young boy received Keira’s pancreas and liver.
Then we come on to Keira’s heart. It was given to a very brave and very sick 10-year-old boy, who has since very much become the figurehead of this campaign. I refer of course to Max Johnson. Max has been mentioned, quite rightly, so many times in this House and so many times during the passage of this Bill through Parliament. The media are calling it, quite rightly, Max’s law. I have a slight preference for it to be Max’s and Keira’s law, but it is actually the law for everyone who has found themselves in this situation—every parent, every relative or loved one, who has had to make the sort of agonising decision that Keira’s father made on that day—and for everyone who has benefited from the donation of an organ from a deceased person, as Max Johnson did.
It is Keira’s story; it is Max’s story; and it is a story of how a very brave and, I am sure, a very difficult decision to allow Keira’s organs to be donated has given life to other people who would otherwise almost certainly not be here today. Surely, of all of the arguments for supporting this Bill and for securing its swift passage on to the statute book, that is the strongest one—that this Bill is about saving lives. It is about giving people the gift of life just at the point when it might be taken away from them, and just at the point when it has been cruelly taken away from somebody else.
More organs are going to be available for donation as a result of this Bill, and that is crucial. We have heard some of the statistics from other Members, so I will not rehearse all of them, but I want to mention a couple of figures that I think are important. According to the latest NHS statistics, only 1% of people who die each year do so in what the NHS describes as “suitable circumstances” to allow their organs to be donated. I think we can probably guess, without going into too much detail, what lies behind that careful use of language. It means that only a very tiny proportion of people who die each year are not only suitable to have their organs donated, but have signed up voluntarily to the organ donation register.
If we cast our minds back to O-level or GCSE maths— depending on our ages—and the world of Venn diagrams, we can see that we need to have a lot of people in the middle bit where the circles intersect to ensure that enough organs will be donated to save lives. Because of the current way in which the law operates, that bit in the middle is not big enough: it does not have enough people in it. Bluntly, we do not currently have a system that allows for enough organs to be available to save enough lives. This Bill changes that, and that is why it is welcome.
Neil O’Brien
My hon. Friend is talking about the circles in a Venn diagram. I just make the point that many people would actually like to give their organs so that other people could live, but their relatives simply do not know that at present. This Bill is one way of solving that terrible problem.
Peter Heaton-Jones
My hon. Friend makes a perfect point. That is indeed the case, and another reason why the Bill is incredibly important.
Mr Khalid Mahmood
I commend the bravery of Keira’s father in making that decision at the very difficult point of the end of her life. Importantly, the Bill will allow families to discuss this issue before things get to that stage and, as has been said, a difficult decision made at a difficult time could become somewhat easier to confront, and other lives could be saved.
Peter Heaton-Jones
That is correct. As someone said earlier, we do not like talking about this stuff, although we should be talking about it more. If the Bill provides us with such an opportunity, that is another reason why it needs to be welcomed.
Although three people a day die from a lack of suitable organs, the situation is worse among people from the BAME community who are more likely to suffer from illnesses that require an organ transplant. The National BAME Transplant Alliance has highlighted that issue, and said in its submission that consent to organ donation must be increased among ethnic minority communities, because transplants are more likely to be successful when the donated organ is a closer match to the recipient. Sadly, however, within that community there is a lack of organs available for donation. That has to do with many issues, including a lack of willingness —perhaps for cultural reasons—to discuss the issue within the family, or perhaps a lack of access to knowledge about the way that the organ donation system works. There are a number of issues, but it is simply iniquitous that the BAME community should suffer more, for whatever reason, and that is why the Bill is so welcome and necessary.
Mr Khalid Mahmood
That is a key part of this Bill because it will allow BAME communities to discuss this issue. I know that there are barriers in terms of some religious thought on this matter, and we are working with the kidney transplantation unit at the Queen Elizabeth Hospital in Birmingham to try to make people aware of this issue during Ramadan and other periods. More such campaigns would enable us to get the message across to people that organ donation saves lives, and in terms of religious matters, we have a letter from the Board of Deputies to recognise that. We need more support from within the Muslim community to say that this is permissible.
Peter Heaton-Jones
That is an extremely interesting point, and just the hon. Gentleman raising the issue in such a way will help to raise awareness. We are doing part of the job merely by discussing it in this way.
I have fully supported the Bill through all its stages, and it is significant that it sailed through Committee in record time—I think we were there for about 35 minutes. There were no amendments, which is a legacy of how well it was drafted in the first place and a tribute to the fact that the Bill enjoys cross-party support. However, one issue raised in Committee is worth mentioning again, although I am sure the Minister will address it in her remarks. To understand it, we need to look to Spain, where a similar Bill to the one under discussion has been in force for some little while. In Spain, it appears that the legislation has significantly increased the number of organs available for donation and saved lives, but—and this is an important but—the Bill introduced not only a change to the legislation, but additional Government investment to ensure that people could access an education and information campaign and understand that the law had been changed. The campaign encouraged people to hold conversations with their families and to ensure that there was no misunderstanding, and that the Government or the state were not saying “We’re taking your kidneys and liver from you whether you like it or not.” It was extraordinarily important that the public information campaign went hand-in-hand with the change in legislation.
In Committee, the Minister said that the Government would commit £30 million over three years for a public information campaign, with an additional £2 million for one-off spending at the start when there will be a spike in interest and administration. That is most welcome. However, in fully supporting the Bill, I gently make the point that I look forward to hearing confirmation from the Government that they will support the Bill with the necessary financial backing.
It is very important not only that everyone has their say but that we pass the Bill in the time available, so I will conclude my remarks. I fully support and welcome the Bill. Many people deserve credit for getting it to this stage, not least the hon. Member for Coventry North West, the hon. Member for Barnsley Central and many others. The Government have supported the Bill. The Minister has been tireless in personally driving it forward and I thank her for that. I also thank the other parties in this House—the Bill has received cross-party support. It is refreshing in these times, when we seem on a daily basis to talk about conflict in the political arena, that we have an issue that has rightly brought all sides of politics together. I join my hon. Friend the Member for Torbay (Kevin Foster) in thanking the Daily Mirror. That is perhaps unusual on the Conservative Benches, but, working with Max Johnson’s family, it has been instrumental in pushing this forward.
It has been a pleasure to support the Bill at every stage. I have done so while thinking of Max and Keira. It is their Bill. Let us not forget that it is thanks to the brave decision taken by Keira’s dad on that most difficult of days that four more people are alive today who otherwise might not be. I can think of no better reason than that to ensure the Bill reaches the statute book as soon as possible.
Vicky Ford (Chelmsford) (Con)
It is a huge pleasure to be in Westminster today. I genuinely believe that the vast majority of people who stand for Parliament do so because they want to make the world a better place. I have to admit that on many days I wonder, when I sit on the train on my way home, whether we have actually achieved very much in that regard. Today, however, we have done three exceptional things.
The first Bill will enable tenants to take action against rogue landlords. It will make a real difference to the lives of many of my Chelmsford constituents. The second Bill will mean that mothers will have their names on the marriage certificates of their daughters, a step forward for equality that should have happened many years ago. It will also mean that anyone who wants to can join their partner in a civil partnership, which is so much the right thing to do. Finally, I am so proud to be here for this Bill on organ donation and a register. I know that lots of people, when they look at our proceedings, think that there are only a tiny number of Members in the Chamber. Actually, there are many, many more hon. Members in Parliament today just in case a vote is needed.
I would like to put on record my huge thanks to the hon. Member for Westminster North (Ms Buck), my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) and the hon. Member for Barnsley Central (Dan Jarvis), who have helped to drive these Bills through Parliament. As an Essex woman MP, I give huge thanks to my hon. Friend the Member for Thurrock (Jackie Doyle-Price) on the Government Front Bench, who as the Minister responsible has steered the Organ Donation (Deemed Consent) Bill. I also thank the other woman Essex MP, my hon. Friend the Member for Castle Point (Rebecca Harris), who is hiding behind the Speaker’s Chair right now—she has actually just come back—and who as Whip has been key in making sure there are lots of Members here to support the Bill.
I am pleased to support the Bill because organ donation saves lives. For many people, it is the only way their life can be saved, but the system needs changing. According to statistics from the British Heart Foundation, as of last Friday, 6,198 people in this country were waiting for an organ donor, and 285 of those were waiting for a heart transplant. The good news is that more and more people are putting themselves on the register, which is excellent, but the sad news is that it is not keeping pace with the number of people who need a transplant.
Eight out of 10 people in the UK support organ donation, but only one in three are on the register. We need to change that, especially for people from black and minority ethnic communities—one in five of the people who die while waiting for a transplant are from those communities—so I thank the Minister for the helpful toolkit in our inboxes today. It will help us as Members of Parliament to reach out to those communities and give them the necessary information and reassurance to encourage them on to the register.
Will Quince (Colchester) (Con)
My hon. Friend rightly references the very important toolkit, which will be useful in sharing information about this new policy with our constituents, but does she agree that for it truly to work we need to educate people about why the Bill is so vital?
Vicky Ford
I thank my other fellow Essex MP for his excellent point. Essex MPs get things done, as do we all.
I try to think about what has worked in other countries, and it is clear from other countries that an opt-out system makes a difference. As my hon. Friend points out, however, it must go hand-in-hand with information systems and improving the resources available to our excellent health service staff. That is key to ensuring best practice. In countries that have introduced an opt-out system as part of a wider package of measures, it is associated with an increase in the number of donations and lives saved.
I support the soft opt-out system, as it is called, under which family members can say that they do not want their love one’s organs used for donation. It is important that family members have that choice. I have been struck listening to family members who have made that difficult decision after losing a loved one—we just heard the beautiful example of the young lady whose heart went to Max—talk about how much pride and hope it has given them to find out that their loss has resulted in many other lives being saved. That said, it is important, where family members feel strongly that a loved one’s organs should not be used, that they have the option of that soft opt-out.
Having said all that, I believe that with a clear and detailed communications strategy following the introduction of the system, and with investment in the right health structures to give our outstanding NHS workers the resources they need, the Bill will make the world a much better place for many of our constituents. Thank you Mr Deputy Speaker, for making sure we all came here today to pass these Bills.
Trudy Harrison (Copeland) (Con)
This private Member’s Bill has my full support. It was introduced by the hon. Member for Coventry North West (Mr Robinson) and inspired by the Daily Mirror campaign to find an organ donor for a little boy from Cheshire, Max Johnson, whom we have heard so much about this afternoon from the hon. Member for Barnsley Central (Dan Jarvis) and many others.
In preparing for this debate, I was saddened to learn of just how many people lose their lives due to the lack of a suitable donor. In adopting this Bill, England would have a similar system to Wales, essentially an opt-out system where consent would be presumed unless otherwise stated.
There is already overwhelming public support for organ donation. According to the NHS Blood and Transplant website, over 80% of adults in England say they would definitely donate or would consider donating their organs, but only 37% of the UK population have registered as a donor on the NHS organ donor register.
While the then nine-year-old Max was the inspiring story behind the Daily Mirror campaign, at any one time there are more than 6,000 people waiting to have life-saving transplants. I spoke to one such person, a chap in my local West Cumberland Hospital, during his dialysis treatment in our new renal unit just last month. There are still many desperately sad accounts of lives being lost, with families destroyed and children without their parents.
The Johnson family spent almost eight months on a transplant ward; they said it was a “rollercoaster” of a year, sometimes worrying that their son’s weight might have dropped too low to continue on the transplant list. After 196 days of waiting, a tragically fatal car crash resulted in a suitable heart donation from a little girl, Keira Ball. I echo the comments of the hon. Member for Barnsley Central, and of my hon. Friend the Member for North Devon (Peter Heaton-Jones) in his emotional speech, in expressing admiration for Keira’s family.
Being a mum of four daughters myself, I was devastated to learn of other accounts, particularly that of Jade Gulliver’s sister. Jade, a mum to two little boys, died at just 27 while waiting for a liver transplant. She had viral hepatitis. Her sister said:
“You hear about transplants on the telly, but you never expect it to happen to someone you know. She kept getting sicker and sicker. I can’t explain what it was like—waiting every day for a phone call that never came. We take the boys to the bench we have in Jade’s memory for birthdays and anniversaries and we show them pictures.”
Jade’s sister went on:
“I will be the first to admit, before this tragedy, I also was almost ignorant to organ donation. Now I want to do everything in my power to prevent this from happening, so that no more families have to go through what our family has been through, and is still going through.”
It is not at all difficult to opt in. In fact, while preparing for my speech last night I decided that, in order to speak with any conviction and to be in an honest position to encourage the country to take the decision to donate, I at least needed to ensure that I had joined the register, so that is exactly what I did. But what dawned on me at that time, working late in my office here in Parliament and enjoying a mug of coffee and looking forward to getting back up to Cumbria to see my family and friends at the weekend, was how relatively relaxed I felt about making a decision that could only come into effect after my death. Online, I made a choice to donate all the bits of me that could ever be useful, and was rewarded for my choice by being informed that my decision could improve or save up to nine lives. I could instead have individually chosen my heart, lungs, kidney, liver, corneas, pancreas, tissue or small bowel, or any combination of them.
After I had registered, the website encouraged me to take three next steps to make clear my decision to my loved ones. It gave me advice on how to introduce the conversation, how to explain that my decision could improve or even save a life and how to tell them why and how I had arrived at my decision. I have had this conversation many times at home; it is a popular topic around our kitchen table with my four daughters. Personally, I have a positive outlook on life and understand that the only certainty in life is death, but it is a much more difficult to have that conversation with my husband. We are all different. One thing is sure: if the worst had happened, and if my daughters and husband, or my mum and dad, had been forced to make that decision shortly after my sudden death, it would have been very difficult for them.
For me, last night, registering was a simple choice, made without any doubt in my mind, but it is important to note that of the 500,000 deaths each year in this country, only around 5,000 people die in circumstances, or from conditions, that mean their organs could be considered for transplantation. I am sure the Minister will agree that the Bill will significantly improve the chances of finding a suitable donor for the 6,100-plus people currently waiting for that phone call to tell them of a suitable donor who could improve or save their life. It is a tragedy that three people will die today because of the lack of a donor.
The Bill seeks to improve and save lives, but it also seeks to take out some of the decision making at a time when families are suffering the worst possible ordeal of losing a loved one. There are nearly 25 million people on the NHS organ donor register, and such high rates of voluntary donation should be applauded, but I realise that there will be people who, for a range of religious or other reasons, do not want to become full or even partial donors. That choice must be respected. I hope that the Minister can reassure the House that opting out will be possible under the Bill. We know that the numbers of registrations have significantly increased following public awareness campaigns—I hope that this afternoon’s debate will result in such an increase—but that is still not enough to prevent the unnecessary deaths of an average of three people each and every day. Thousands of lives are needlessly being lost, and in thinking of all those who continue to suffer and the inevitable devastation for their family and friends, and in the belief that the Bill will save and improve so many lives, I will be supporting it through its parliamentary stages. I hope that colleagues across the House will do the same.
The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)
It really is a pleasure to confirm the Government’s support for this important measure from the Dispatch Box today. I join other Members in sending my good wishes to the hon. Member for Coventry North West (Mr Robinson), who has been the driving force behind the Bill, and I am grateful to him for choosing this as the subject of his private Member’s Bill, because it will save lives. I also want to thank the hon. Member for Barnsley Central (Dan Jarvis), who actually began this journey for me with his Westminster Hall debate on the subject, which took place before we launched the campaign to take this Bill ahead. This has been quite a journey for us, and it has been a pleasure to work with him and the hon. Member for Coventry North West. They have made it very easy for me to work with them; we were all very focused on the outcome that we were trying to achieve, which was to save more lives, and we have approached the matter practically and pragmatically. I wish the Bill Godspeed to the other place, from where I hope it will emerge unscathed to take its place on the statute book very soon. I shall certainly be saying my prayers to ensure that it does so.
Lots of colleagues mentioned the debt that we owe to Trinity Mirror for a campaign that captured the public’s imagination, and we are grateful to Max and his family for their role in it. However, we cannot thank the family of Keira Ball enough, and my hon. Friend the Member for North Devon (Peter Heaton-Jones) has been fantastic at telling their story. One of the joys of doing this job—I always feel inadequate and utterly humbled—is meeting donor families. It is great to have the hon. Member for Birmingham, Perry Barr (Mr Mahmood) here, because we should not forget live donors and their altruism. It is incredible that people will make such donations voluntarily and, it must be said, at great personal risk. Giving the gift of life is something that donors and their families should be proud of, and I never fail to be inspired by those stories. We think today not only of those who benefit from organ transplants and those on the waiting list—we hope to be able to save more of them—but of donors and their families, without whom we would not be having this debate. I thank them all.
The real objective of this Bill is to ensure that we improve the chances of the thousands of people who are desperately waiting for a transplant. Again, I totally associate myself with the comments of the hon. Member for Barnsley Central when he introduced the Bill, because it will not achieve the degree of change that we want on its own, but one of the happy advantages of this Bill and of the Daily Mirror’s campaign is that we have raised awareness of organ donation. Such things were rare 40 years ago, but donation has almost become so commonplace that people may think, “That is somebody else’s problem. I don’t need to worry about registering my preference. Somebody else will do it. There isn’t the need.” Well, there is a huge need. We also need to remind people that dialysis is a life-saving process, but it is not nice. We have become desensitised to just how challenging such illnesses are.
The Bill provides us with a fantastic opportunity to raise awareness of the whole organ donation issue, which I have been pushing NHSBT to take full advantage of, and I am pleased to say that it has. We will obviously have to build on that progress as the Bill moves forward. My hon. Friend the Member for North Devon pressed me on that, and if the hon. Member for Coventry North West was here, he would have done the same. I can tell the House that we will be investing £18 million over the next three years to raise awareness of the new scheme and to encourage people to register their wishes and have conversations with their families, which is by far the most important thing. There will be £18 million over the first three years, but ongoing communication to raise awareness will very much be part of how we take things forward.
If Members and anyone watching today have not had that conversation with loved ones about their wishes in the event of their death, please have it. The last thing we want is for loved ones, in the unhappy event of a loss of a life, to be put into a position where they have to make a judgment not knowing the true wishes. We have heard how people have approached that and doing so is immensely brave. I sometimes hear from donor families that the decision was easy because they had had that conversation, and I cannot repeat that message often enough.
I associate myself with the comments of the hon. Member for Barnsley Central when he said that the Bill is not about the state taking control of people’s organs. Organ donation is a gift, and that is a fundamental principle of the Bill. We are altering the basis on which people’s wishes can be expressed, which will have the effect of altering the conversation at the bedside when it most needs to take place. However, we will continue to invest in the specialist nurses who are trained to have those conversations in the most sensitive way. It is important that they are specialists, because the surgeons and medical staff who are emotionally invested in trying hard to save a life should not be the ones who then must have that conversation with the family—that clearly would not work.
I totally endorse the argument that, in addition to the new system, the accompanying measures relating to all support staff and communication will contribute to an increase in the number of organs available for transplant. It is only by taking those measures together, rather than in isolation, that the scheme will be successful.
In the time remaining, I want to address some issues that have arisen. There is a lot of nervousness. People are inhibited from signing up to organ donation mostly by a sense of mistrust—of institutions of the state and of medical professionals—and because they do not really know what happens. I want to put some points on the record to calm the situation and provide reassurance.
We have talked extensively about the need for more donors from black and Asian communities because they are more likely to suffer from conditions that require a transplant. Obviously, the most successful transplants are those with a strong genetic match, so we need more of those donors.
We know that the issue is taboo in some communities. Some people believe that there are reasons of faith for not supporting transplantation. We have been working with various faith leaders to develop messages and materials to reassure people that the practice is consistent with their beliefs. I am grateful to my hon. Friend the Member for Torbay (Kevin Foster) for mentioning that the Board of Deputies of British Jews supports the Bill. We have had similar conversations with representatives of the Hindu faith, the Sikh faith and the Muslim faith, as well as with Christian Churches.
That dialogue needs to continue. It is clear that people will respond to messages from people whom they trust and respect, so it is very important that we continue to engage with faith communities. It cannot all be done at once; we need to keep chipping away and sending messages. I hope Members will use the toolkits I have circulated today. They are designed to equip Members of Parliament, who are trusted in their communities and are good advocates for the proposal, with the material to engage directly with communities.
Much reference has been made to the role of families at the bedside. There is concern that families often overrule the wishes of people who want to donate, but we need to protect the family’s ability to have that final consent. It is very easy for us to imagine situations in which we would want our wishes to be respected, but we do not know the circumstances when it comes to matters of life and death. It is very important that families have that final consent, and I emphasise that that will remain the case. I cannot emphasise enough that if people have that conversation with loved ones, their wishes are less likely to be overruled.
I remind the House that guidance on the current system of consent is detailed in a series of codes owned by the Human Tissue Authority. We will update those codes and people will have the opportunity to make representations. The idea is to have a complete, up-to-date document providing information on the approach taken in England. The guidance will cover how consent can be expressed; how people can register their wish to opt out; the role of the organ donor; and how specialist nurses will interact with families. It will also give people the opportunity to record that their faith is important, if they wish that to be an issue of consideration.
It is also worth noting that as we develop technological solutions to addressing things in the NHS, people will be able to amend their views on donation regularly by direct interface with an app. They will be able to change their mind. One day they might decide that they are happy to give their corneas and then on another decide that they are not. People will be able to make that selection and make anything that they would wish to be considered clear.
On timing, we hope that the Bill will receive Royal Assent by March, in which case the HTA is all set to go to produce a first draft of the code by May. That will be followed by a 12-week consultation on the draft guidance with stakeholders, including faith groups, so there will be another opportunity for us to address any concerns properly at that time. We expect to lay that guidance before Parliament next September. I can therefore assure the House that we intend to make use of this Bill speedily once it has received Royal Assent.
I wish to make a point about children. Obviously, children below the age of 18 will be exempt from the Bill, as they are not at the age of majority in order to make their choices known. As before, the family will be fully consulted. The safeguard will be as it is now, and children are always dealt with extremely sensitively.
I have mentioned that we will continue to engage with faith groups. I wish to emphasise that NHSBT is updating and extending its faith training, so that as we can expect more conversations to be taking place on the part of specialist nurses following this change, people will be kept fully up to date with any religious and cultural issues that might need to be considered.
Finally, I wish to say something about an issue that Members may have been lobbied about: novel transplants. We have all talked a lot today about kidney, liver, heart and lung transplants, and these are the organs we are all used to talking about. Clearly, medical advances being what they are, other things will materialise; I have heard evidence of hand, face and uterine transplants. They will not be covered by the Bill. They will be exempted by our introducing regulations that exempt certain organs from the deemed consent procedure. We have done it that way because this Bill needs to be able to have a life and to respond to medical advances, so it is better to have regulations that enable us to exclude rather than to have a list of organs that are covered. In that way, it is easier to keep this law in date.
Andrew Bowie (West Aberdeenshire and Kincardine) (Con)
Does my hon. Friend know whether the proposals she has set out on protecting parts of the body such as hands and the other things she mentioned will be marrying up with legislation going through the devolved legislatures now? Will we therefore have a similar code of practice across the entire UK?
Jackie Doyle-Price
Just as this Bill has progressed with good will from those in all parts of this House, so it has progressed with good will from all nations. We have all been sharing our experience to make sure that we get this right. So I am sure that that will be taking place in a consistent way.
In conclusion, as I said at the beginning, I am so proud that I have been able to play my part in taking this Bill forward. I am so grateful for the good will from both sides of the House in taking this forward. It has been a fantastic piece of cross-party working. It has made the process quick and speedy, and we have all been focused on what we are trying to achieve, which is to save more lives. I am very confident that Max’s and Keira’s law will have a very positive impact on how we treat people with organ failure and that it will also kick-start a cultural change in how we address these issues. In fact, it already has: people are talking about organ donation much more and joining the organ donor register at increased rates. I hope that the House will give the Bill its wholehearted endorsement.
Dan Jarvis
With the leave of the House, and on behalf of my hon. Friend the Member for Coventry North West (Mr Robinson) as well as myself, I thank all Members who have contributed to and supported this important debate. We have seen the House at its very best with Members from right across the political spectrum working together to deliver meaningful, real change on behalf of their constituents. I take this opportunity to extend formally my thanks to my Front-Bench colleagues for their support, to the Minister, of course, to the Government and to all the officials who have made this possible.
The Bill is a welcome measure that will make a huge difference to thousands of people right around our country. Max and Keira’s law will save lives and give hope to many. I look forward to the Bill receiving Royal Assent at the earliest available opportunity. As many Members have said, this is only part of the process by which we increase awareness and encourage the most important conversations around organ donation. I thank all Members who contributed to the debate and supported the Bill’s safe passage through the House. It is much appreciated.
Question put and agreed to.
Bill accordingly read the Third time and passed.
Organ Donation (Deemed Consent) Bill
Monday 29th October 2018
(5 years, 5 months ago)
Lords ChamberRead Full debate Organ Donation (Deemed Consent) Act 2019 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 12 September 2018 - (12 Sep 2018)
Organ Donation (Deemed Consent) Bill
Friday 23rd November 2018
(5 years, 5 months ago)
Lords ChamberRead Full debate Organ Donation (Deemed Consent) Act 2019 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 12 September 2018 - (12 Sep 2018)
Lord Hunt of Kings Heath (Lab)
My Lords, I should first like to declare an interest regarding my forthcoming appointment to be a member of the General Medical Council.
Lord Hunt of Kings Heath
It is a good start, my Lords—just have to keep going.
Every year, NHS Blood and Transplant holds a number of very moving ceremonies with donor families. These occasions are wonderful celebrations of the gift of a loved one’s organ, to give life to others. Last year in England, there were over 1,300 deceased organ donors and over 3,300 transplants. That is a wonderful achievement but we could do so much more. My Bill aims to increase the number of organ donations while maintaining strong family involvement in the decision which, I stress, will remain a remarkably altruistic act of giving. Nothing in this Bill will change the concept of giving.
It is thanks to the tireless work of a number of people to promote the Bill, especially my honourable friends Geoffrey Robinson and Dan Jarvis, who secured unprecedented cross-party support, that we are today a step closer to putting it on to the statute book. I extend my thanks to the Prime Minister and my right honourable friend the leader of the Opposition, and to other leaders of the political parties in Westminster, for their continuous support for the Bill, and to the Daily Mirror, for its unflagging and enthusiastic support. I also pay tribute to the noble Baroness, Lady Randerson, who took forward subsequent legislation in Wales to allow organs and tissues under deemed consent to be used in transplants in the rest of the UK countries. I am hoping that she may inform the House of the latest progress in Wales regarding the legislative changes that occurred there.
The Bill is often referred to as Max’s and Keira’s Bill, in honour of a recipient, 10 year-old Max Johnson, who recently received a “Pride of Britain” award from the Prime Minister for his immense bravery while waiting for a heart transplant, and the donor, Keira Ball, who tragically died in a road accident. I pay tribute to both of them.
There is currently a record 20 million people in England recorded on the organ donor register, but 400 people died last year while waiting for transplants, and a further 755 people were removed from the transplant list as they were just too ill to receive treatment and a transplant. This is partly down to the fact that only 1% of people die in circumstances where their organs are suitable for donation. It is also partly because members of the family are often not aware of their loved one’s wishes, and sometimes find it safer to say no. Our ambition is to achieve an 80% consent rate in England. This will not happen overnight; the experience in Wales is clear in that respect. However, if we reach that target and 80% of families allow donation to go ahead, there will be 280 donors a year, which could lead to as many as 700 more transplants a year. The Bill, if enacted, will be a significant step forward. Starting from the basis of presumed consent, the family would still be fully involved in the decision. The aim essentially is to spark in England the positive culture change that many nations in Europe have experienced, following their change to an opt-out position. It will mean more people being inspired to have that incredibly important conversation with their loved ones, knowing that the life of a person waiting for a transplant could be saved.
In countries where deemed consent systems are in place, there are generally higher numbers of organ donations when supplemented with wider measures. I will return to that later. It is particularly pleasing to note that Wales has now reached a consent rate of 70%, and the first few months of 2018 showed that rising to 73%.
I would like to give a summary of the Bill, which consists of three clauses. First, however, I would like to clarify a few things about its scope. The proposed consent system only covers deceased donations—it does not apply to living donations or donations for research purposes. The Bill would make changes to the Human Tissue Act 2004, which covers England, Wales and Northern Ireland, but it would make the changes to consent in England only. The system of deemed consent in England will be consistent with the Welsh opt-out system. Transplants which currently take place under the current system—heart, lung, kidney, liver, pancreas, bowel and tissues such as corneas, skin, bones and tendons—will fall under the deemed consent provisions. Excluded from those provisions will be the less common organs and tissues, often called novel transplants. These will still require express consent.
Following consultation, regulations will be set out by the Secretary of State in an affirmative statutory instrument, which will specify which organs or tissues will be excluded from deemed consent. A Written Ministerial Statement will be part of the process every time the regulations are amended. It is important we have an approach consistent with Wales and Scotland on these issues to make sure that nurses and clinicians working across borders follow the same approach.
There are other important safeguards in the Bill. First, all children below 18 will be excluded from deemed consent, although they will still be able to register as now to donate their organs. People who are not ordinarily resident in England for at least 12 months immediately before their death will be exempt from the new arrangements. In practice, this means that people living in England in the short term will not be affected by changes in the consent system. The Bill also provides a safeguard for people who lack the capacity to understand the concept of deemed consent for a significant period before their death. The decision on whether a person lacks capacity will continue to be established in accordance with the Mental Capacity Act 2005.
Very importantly, the Bill sets out the role of the deceased family and friends under the proposed arrangements. It makes it clear that they may provide information suggesting the deceased would not have consented, to prevent donation proceeding. This is very important. I reassure noble Lords that the family of the deceased will continue to be involved in discussions with specialist nurses about their loved one’s wishes and how best to support those wishes, also taking account of faith and cultural considerations. Clinicians will never proceed if the family object strongly. I know the Government have worked hard with different faiths to ensure that they are comfortable with how deemed consent will work. As Kidney Care UK put it, changes in the law on consent do not change the importance of people talking to their families about their wishes in respect of organ donation.
To support the smooth implementation of the provisions in the Bill, it places a duty on the Human Tissue Authority, the regulator, to update its code of practice and issue practical guidance for professionals. The new codes will be consolidated in a single code, to be consulted on and laid in Parliament. The Bill will also allow all organs removed in England for transplantation purposes to continue to be used across the UK, to save as many people in need as possible.
Clause 3 sets out that the Bill extends to England, Wales and Northern Ireland as it will be amending the Human Tissue Act 2004, which extends to those countries. It sets out that Clauses 1 and 2 will come into force on the day or days that the Secretary of State appoints in regulations made by statutory instrument, so in effect the Secretary of State will have to set out what the commencement date is for deemed consent in England. Clause 3 automatically comes into force on the day that the Act is passed.
I recognise that a change to the consent system is not a panacea. The Bill needs to be accompanied by an assurance that capacity in the NHS in terms of transplant teams, intensive beds and specialist nurses will be sufficient. I particularly mention the need for good-quality training and greater numbers of specialist nurses. They are remarkable people who have the extremely difficult role of initiating discussions about potential organ donations with families at such a sensitive time. The Spanish experience is that investment in specialist nurses is one of the major factors in their success and the transformation that has occurred in Spain.
It will be essential to have a strong communications strategy to ensure that the public are fully aware of the changes, and I look forward to the Minister’s response on that. I would also say—and I think this is the Welsh experience—that it is important to have follow-up campaigns because clearly, the cultural change we want to see will not happen overnight.
I end by saying that I am clear that the gift of giving will be as strong a part of organ donation as ever. I thought the Minister in the other place, Jackie Doyle-Price, put it well when the Bill went through its Commons stages:
“The most important thing any of us can do if we want to increase organ donation is ensure that we all have those conversations with our families, so that they understand our wishes … One of the great virtues of the Bill and the surrounding campaigns is that we have encouraged people to have those conversations. It has been a real driver of cultural change in that sense”.—[Official Report, Commons, Organ Donation (Deemed Consent) Bill Committee, 12/09/18; cols. 11-12.]
I think that puts it very well. I am confident that, if enacted, the Bill will play a significant role in changing the culture towards organ donation in England and help hundreds of lives in the years to come. I beg to move.
Lord Lansley (Con)
My Lords, I am privileged to have the opportunity to speak following the noble Lord, Lord Hunt. I very much applaud the way in which he has brought the Bill forward and the way he presented it today. I thought he covered exactly the points that must be at the forefront of our minds in thinking about its implementation. It is my hope and expectation that the Bill will pass into law, and that it will have precisely the beneficial effects that its promoters have sought.
It might be helpful, at this early stage in the debate—I know we all share the objectives—to review the previous thinking about these issues, not least from the passage of the 2004 legislation that we are amending. The noble Lord, Lord Reid of Cardowan, was Secretary of State at the time of the 2004 Act. I was shadow Secretary of State in another place. My interest in these issues was not least as a constituency Member of Parliament, in that I represented both Addenbrooke’s Hospital, where clinicians led by Roy Calne did ground-breaking work in reducing the rejection of transplanted organ tissue, and Royal Papworth Hospital, which has the largest number of heart and lung transplants, and is where Terence English conducted the first UK heart transplant and John Wallwork and colleagues performed the first heart and lung transplant. So I was always closely concerned with and supportive of the transplant work they were doing.
In 2004, however, it was not concluded during the passage of the legislation that we should proceed on the basis of deemed consent. There were two parts to that. First, the evidence continued to be inconclusive that deemed consent itself was the principal issue in obtaining the necessary organs for transplantation. The noble Lord, Lord Hunt, referred to the Spanish experience, which was relevant and much debated at that time. We are going back some way, but those responsible for the system of consent in Spain took the view that an opt-out system was not the most important part of their experience in achieving the best transplant rates in Europe. A subsequent review was published in the journal Health Technology Assessment in 2009, so a little later. I was Secretary of State in 2010 and it was part of the thinking then. The conclusion of that systematic review across a number of countries said:
“Presumed consent alone is unlikely to explain the variation in organ donation rates between different countries. A combination of legislation, availability of donors, transplantation system organisation and infrastructure, wealth and investment in health care, as well as underlying public attitudes … and awareness … may all play a role”.
I am simply reiterating what the noble Lord made clear in moving the Second Reading today. All of those things matter.
In 2004, the noble Lord, Lord Reid of Cardowan, said that he did not agree with the principle of deemed consent because, across the National Health Service and healthcare, we were setting out to ensure that consent was enshrined in our activity and that we should not proceed except on the basis of informed consent. To deem consent, arguably, is to abandon that principle. In this instance, we have to recognise that we are treading across an important ethical boundary, and understand why and how we are doing it. It is not that we should not do it, but that we understand the importance of recognising it.
As the noble Lord said, there is a provision in the Bill that says that, where families can demonstrate a reasonable basis for thinking that the deceased person would not have consented to transplantation, they should not proceed. The question also arises of a family who has no evidence of what the deceased person may have said, but objects themselves. We need to think carefully about that, not least because of what I remember from talking to nurses involved in transplanting at both Addenbrooke’s and Papworth, during the passage of the legislation in 2003. They said they did not quite understand what an opt-out system really meant. What is the difference between, on the one hand, asking the family of somebody who has died whether they would consent to donation; or, on the other hand, saying that, although consent is deemed to have been given, we are none the less going to ask whether you agree or object? They found it difficult to understand the difference.
In practice, we should recognise that there is a difference in terms of public attitude and awareness. I think that was demonstrated in Wales, and I look forward to hearing from the noble Baroness, Lady Randerson, about the Welsh experience. In the first year or so, it was not evident, because the numbers were small and the period of time relatively short, that there was a major shift. It may well be that more of a shift is taking place over time. But much of that may be less to do with the fact of deemed consent and more to do with public awareness and support for the process itself.
After our debate on the 2004 legislation, I would not want us to proceed in this debate thinking that the broader range of issues were then neglected. They were not. In 2008, the then Labour Government instituted the Organ Donation Taskforce, the objective of which was in the subsequent five years, I think, to increase donor rates by 50%. In practice, they went up by about 45% and have continued to increase. That is precisely because the things that we know are also important were happening. There was increased public awareness and there has been an increase in the number of people on the organ donor register. After 2010, we engaged the nudge unit—the behavioural unit—to think about how we could nudge people to make that choice before their death. That has had some benefit through organisations such as the DVLA, but especially in the training of staff in the NHS and the appointment of additional specialist nurses for organ donation. It is important that it is not the clinicians who have been trying to save a life who then have to speak to the family about organ donation. Having those specialist nurses available and staff having the right training is really important.
All those things happened under the Organ Donation Taskforce, so on that basis, I do not share the view of Chris Rudge, who was the transplant director when I was Secretary of State and was responsible for the implementation of the task force, who I believe continues to oppose deemed consent. I think we have an almost ethical obligation to do everything that may contribute to the achievement of higher donor rates and thereby to save lives. The noble Lord, Lord Hunt, is absolutely right: it is tragic that so many people are on the waiting list for organs and die or leave the list without the benefit of a transplant. We must do everything we can.
I urge colleagues to recognise that we must think very carefully about how we do that and to recognise that there are other things that we have done and should continue to stress which may themselves make a significant contribution. We should proceed only on the basis that there is consensus, which happily there is, between parties and, I suspect, widely in the country. The objective is so important that we must be willing to take the ethical step of deeming consent where we cannot be absolutely sure what the deceased person’s view would have been. On that basis, I hope that the House will give the Bill a Second Reading.
Lord Patel (CB)
My Lords, first, I congratulate the noble Lord, Lord Hunt, on his appointment to the General Medical Council. I do not know whether I should also sympathise with him—I hope it bodes well for the GMC—because he certainly needs it.
I support the Bill, which proposes new opt-out legislation for the organ donation register. It is not a position I have held before when I have previously spoken about deemed consent, but I have had a change of mind.
Before I go any further, I am very pleased to see that the noble Lord, Lord Elder, will speak in this debate. I very much look forward to his contribution. I also put on record my gratitude to all those involved in organ donation. Every transplant is a reflection of the exceptional altruism of the donor and their family, and a testament to the care and hard work of many in the hard-pressed NHS. This has led to the organ donation and transplantation numbers reaching an all-time high. Last year, for the first time ever, 5,000 people benefited from a transplant in a single year.
Despite this, several challenges remain. As we have already heard, there is an increasing gap between the number waiting for a transplant and the number of organs available. Every day, three people who are in need of an organ die. As of 15 November 2018, 6,163 people are on active waiting lists for an organ. Over 300 are children, and over 300 are in need of a new heart. Change in legislation may not by itself be the magic wand, but together with other necessary measures, it may well begin to narrow the gap between those on the waiting lists and the number of organs available.
There is also the challenge of the huge imbalance between the number of people in black, Asian and ethnic minority communities who are in need of a transplant, and the number of suitable organs available for them. More organs from these communities are needed, as blood and tissue types must match, particularly for things like kidney transplants.
Surveys suggest that opt-out legislation leads to higher rates of organ donation, but at the same time, evidence of direct cause and effect is lacking. Clearly, as has already been mentioned by the noble Lords, Lord Hunt and Lord Lansley, other factors must also play an important part in raising the numbers. We need to be aware of what these might be. I agree with the Nuffield Council on Bioethics when it says that opt-out systems can be ethical,
“if people are well-informed, families are appropriately involved (well-supported … ), and trust in the organ donation system is not compromised”.
This means that this Bill must pay serious attention to three key areas. The first is a well-informed public: the public should be informed on an ongoing basis—that point has also been made. Information about organ donation should be easily available.
The second area is the importance of families: families must stay at the heart of the decision-making process. In this respect, the role of the specialist nurses is crucial—again, this has already been emphasised. We need to make sure that there are enough specialist nurses available, as they play an important role at a very sensitive time in families’ lives, both for the donor and the recipient of an organ.
The third area is the importance of maintaining trust in the organ donation system. Public information on the new system will need to be backed up by the continuous education and training of the health professionals involved.
Let me now turn briefly to the challenges in relation to black and Asian communities and organ donation. Over 1,800 patients from black and Asian communities are on the waiting list for organ donation. Some 901 received a transplant last year, but had waited much longer; 114 people donated organs. Some 35% of the total number of patients waiting for kidney transplants are from black and Asian communities, partly because of the increased rates of diabetes and renal disease that occur in these communities, and partly because kidney transplants require a closer matching of blood and tissues than other transplants.
It is important that these communities understand what opt-out means, and that they are involved. While the government campaign will focus on black and Asian and other ethnic minorities, it will require a sensitive approach on the back of opt-out legislation, providing culturally sensitive information, a targeted awareness-raising campaign, and issues that need to be addressed to gain the trust that will be required.
This legislation is widely supported by the medical and other health professionals and charities, particularly those such as the British Heart Foundation, and we should support it too. I hope that the House will not hold it back.
Baroness Crawley (Lab)
My Lords, I too congratulate my noble friend Lord Hunt on his important work in bringing the Bill before us today, and of course on his new appointment—we are very proud of him.
In so many ways, the business of politics should be to minimise unnecessary pain and marginalise premature death, as the noble Lord, Lord Lansley, said. According to the latest NHS figures for the year ending March 2018, the total number of patients whose lives were saved or improved by an organ transplant increased by 7% to 5,090, as the noble Lord, Lord Patel, said. It is a mercy that we live in a time when, thanks to science and innovation, sick children can be given new hearts—but really they are old hearts. This is the most wonderful form of recycling we can ever hope to see. Like all good recycling schemes, the more people who get involved and take action and tell their kids about it, the stronger and the healthier our society becomes.
The statistics show that the incidence of every kind of organ transplant is rising, from donors both living and deceased. But hundreds still die every year while waiting on the list, hoping for a donor who does not appear. We are told of the 426 patients who died last year on the waiting list for new organs; of those, 17 were children. There can be nothing more gruesome for their families—all those loved ones who know that the science is in place and the doctors are ready, but the phone never rings. Their souls must be truly sealed up with tears.
Everyone knows a relative or a friend—I certainly do—whose lifespan has been extended by the good will of a fellow human being whom he or she will most likely never meet. The silent solidarity of one particular young man who has bone marrow drawn out of his pelvis so that an older man can defeat blood cancer is the most precious human currency we can ever store. The kidney, the pancreas, the liver, the heart and the lung can all be used more than once. A thousand tons of relief and joy must pour into families every year because of this modern, scientific and miraculous reality.
I congratulate Dan Jarvis and all those from all sides of the House in another place who have pushed so hard to make Max and Keira’s law not merely a step forward but, with this opt-out provision, a turn of the ratchet. The Mirror’s campaigning activity, sustained over several years, is a credit to the editor and the journalists concerned, as well as to all the brave families who told and retold their stories in its pages. Such a sustained campaign has been needed because, although 80% of people said they would be willing to donate their organs when asked last year, only 37% had recorded that decision on the NHS organ donor register. The gap is important.
Finally, as the noble Lord, Lord Patel, mentioned, we are surely all glad that, where in the past there have been cultural and religious inhibitions about post-mortem transplants, that now seems to be something of a losing force. I hope that continues. We have to hope that the whole of England, in all its glorious diversity, absorbs the message of deemed consent and that every community teaches its young that organ donation is one of the highest forms of good.
Baroness Chisholm of Owlpen (Con)
My Lords, I am delighted to support this Bill and thank the noble Lord, Lord Hunt, for bringing it before us today. Its importance cannot be overestimated. It is a good and—thank goodness—simple Bill, and it will save lives. As the noble Baroness, Lady Crawley, and the noble Lord, Lord Patel, mentioned, there are encouraging signs of donors coming forward, but the statistics are still depressing and distressing. As we have heard, Wales already has a presumed consent or opt-out system, and Scotland intends to follow suit. As the noble Baroness, Lady Crawley, mentioned, research has shown that 82% support organ donation, and the public consultation showed unprecedented support, yet we know that only 37% are on the organ donor register.
This simple but effective Bill has the support of doctors and health campaigners. It will not, on its own, solve the problem of getting more donors on the register, but it will enable us to move forward and launch an awareness campaign. I am sure all noble Lords remember the huge publicity around the early transplants, when the successful recipients were household names, seen on TV and interviewed in newspapers and magazines due to the rarity of the procedure. Thank goodness that is not the case today and transplants are now an everyday occurrence, but that headline news was an incentive for people to come forward as donors. The general public are, on the whole, unaware of how important it is for donors to register. Most do not register unless they are personally affected.
Therefore, to be as effective as we hope it will be, this Bill depends on the awareness campaign around it. As the noble Lord, Lord Hunt, mentioned, there needs to be a cultural change. I think I am right in saying that, at present, family refusal rates in the UK are considerably higher than in many parts of mainland Europe. There needs to be education in schools, colleges and universities; an awareness campaign on the radio and TV, in newspapers, magazines and social media; a campaign on lives saved, with examples from donors and recipients; and, perhaps most importantly, a campaign to encourage families to have the conversation. As the noble Lord, Lord Hunt, mentioned, letting the relatives know the organ donor’s decision will make it much easier for them to be supportive at a time of immeasurable grief. I still remember vividly how difficult it was, when I was nursing, to have this conversation with relatives and loved ones, who more often than not were unaware of a donor’s wishes.
This Bill does not change families’ rights. They will continue to be included and will not be overruled; it will not close families out. But the way in which the possibility of donation is presented can have a critical impact on the decision that relatives and loved ones make. Timing, language and the right healthcare professionals are all important factors, and I was pleased to see confirmation in a letter from my noble friend the Minister that there will be specialist nurses for organ donation and a key focus on training to enhance skills in supporting grieving families. It is also vital that those who opt out and relatives who do not give consent feel no shame, and that we respect their decisions.
This Bill is a no-brainer, as far as I am concerned. With the right campaign, it will become apparent that this is not a forced choice and that organ donation is still a gift, perhaps one of the greatest gifts that can be given from one human being to another. One donor can help many recipients. The donor process benefits not only recipients, but also the families of donors and recipients. Recipients’ families have the joy of having their loved ones returned to health, while donors’ families find meaning and gain peace from knowing that lives have been saved as a result of the unfortunate death of their loved ones.
Once again, I thank the noble Lord, Lord Hunt, for bringing this important Bill to our attention, and I am grateful for all the clear explanations of it from both the noble Lord and the Minister, my noble friend Lord O’Shaughnessy. I am delighted that the Government fully support it. Let us now get on with it and get the Bill through Parliament.
Baroness Finlay of Llandaff (CB)
My Lords, I congratulate the noble Lord, Lord Hunt of Kings Heath, on bringing this important Bill to this House. It will bring organ donation legislation in England in line with that of Wales and Scotland for the benefit of all. I should declare that I was involved in the early stages of consultation in Wales, and I introduced the Kidney Transplant Bill in 2008 for presumed consent to donate one kidney, provided there was no evidence either from a central registry or from the dead patient’s relatives that he or she had opted out of being a potential donor. My Bill did not progress but I continued to have an involvement in the developments in Wales.
Many years ago, I conducted a study of bereaved parents and was struck by the comfort that donation gave them after their terrible, tragic loss. Some regretted not being asked about transplant donation and one regretted having declined.
Laws send social messages. When we were considering such legislation in Wales, we undertook very widespread consultation and carefully considered the pros and cons. I hope that England can now learn from our experience, because all the planning and consultation was essential to the success of the legislation when it came into force.
I want to cover how we went about it, the results of our process overall and things that I hope the Minister and the team will implement to take this forward. I am grateful to Professor Vivienne Harpwood from Cardiff University school of law for giving me the latest data. She has worked on this issue for years. I also pay tribute to the noble Baroness, Lady Randerson, whom I would like to call a friend—she is indeed a friend—for the important role she has played in Wales.
A tremendous amount of careful thought and planning contributed to the success of the legislation: there was very careful consideration of the ethical issues; we studied the outcome of similar legislation in other countries and consulted with many sections of society, including faith groups and ethnic minority groups to help us understand their sensitivities, respect their views and address their concerns; and numerous meetings and consultations took place. Although the Human Transplantation (Wales) Act obtained Royal Assent on 10 September 2013, the system did not begin to operate until December 2015 to allow adequate time for people to absorb and understand essential information about the new law.
As we had decided to introduce a “soft” opt-out system, we realised that it was necessary to have a large-scale information/education process, during which families were encouraged to discuss their wishes and people were urged to make their views about organ donation known to their relatives. Every household in Wales received carefully designed bilingual written information on more than one occasion, and there was an extensive media campaign, roadshows in supermarkets and other places, and a national countdown clock. This campaign informed people clearly that they could either opt in or opt out of the organ donor register, or do nothing if they did not object but wished their family to decide. A 20-second TV advert urged, “Talk about your organ donation decision or someone else may speak for you”. It was very powerful.
By 2017, over half the adult population in Wales had talked with family about their wishes. The widespread publicity about the benefits of organ donation helped people understand the gift of life, and we saw an early rise in the number of organs donated and transplanted. We also invested in training specialist nurses in organ donation. As the noble Lord, Lord Hunt, stressed, these nurses are key to the legislation working well. They sensitively explore the family’s recall of those conversations and their feelings.
It is essential that the bereaved family are able to express their views and know that they will be respected, as the Bill before us ensures. There must never be pressure on families. They are being asked to consider donation when they are numb at the sudden loss of the person they love—their child, spouse, fiancée, partner, brother, sister or a parent. Their grief at that time is overwhelming, and they live for the rest of their lives with the events of that tragic day. They remember every word of the conversations they had, second by second. That is why a soft opt-out, as in this Bill and in Wales, is so important.
Remembering donors and thanking families with national events, such as the Order of St John services of thanksgiving, are important to recognise that they have given the gift of life. In my own family, the service honoured the man who died, bringing enormous comfort to all the bereaved, including his children.
Three and a half years after we implemented our legislation in Wales, we now have the highest combined donation rate in the UK of 80.5% after brain stem or circulatory death. Currently, England runs at 66.2%, Scotland at 63.6% and Northern Ireland at 66.7%. Donation after brain stem death now has consent rates in Wales of 88.2%, as opposed to those in England at 73.3%. Donation after circulatory death consent has also risen in Wales to 68%, compared with 59.8% in England. These figures are better than we were expecting when the legislation was going through the Assembly, and the accompanying publicity campaign might account in part for this latest good news and, importantly, that we have not had the problems or backlash predicted.
There has been a steady increase in Wales. On 1 December 2016—the first anniversary of the implementation of the new legislation—the figures indicated that 39 organs were transplanted from patients whose consent was deemed. Welsh Government reports published on the same day were accompanied by positive statements by both the First Minister and the Cabinet Secretary for Health. By February 2018, 39% of the Welsh population had opted in to donate.
When you speak to people from donor families, you realise how glad people are to have been able to transform the lives of complete strangers, despite having faced the overwhelming tragedy of losing a loved one. You realise how important the recognition of their gift is, through these services of thanksgiving and so on, as they go forward in their own lives.
I seek two reassurances from those taking this forward. The first is that the public education campaign will be as thorough and carefully planned as ours in Wales. The second is that it will be accompanied by enough intensive care beds and specialist nurses in organ donation. Families must never feel hurried, and there can be a need to maintain hydration and oxygenation while waiting for the transplant to be set up. Even those waiting for a transplant always keep the phone by them, anxiously waiting for that call to the operating theatre, but it can take some time to get there. I am grateful for the assurance given in the letter from the Minister and the noble Lord, Lord Hunt, that preferential donation, which I argued hard for in 2009, will not be jeopardised. Where a family member is awaiting transplant, and the tissue is compatible, relatives must be able to ask for that specific organ to go to that person, while other organs go unconditionally to others waiting.
On a solemn note, I hope with this Bill we will see an end to transplant tourism, where desperately poor people sell an organ—nearly always a kidney—or, even worse, organs are harvested from executed prisoners. We should follow Italy, Spain, Israel and Taiwan in legislating to confront this abhorrent human rights issue, but that is for another day.
The Bill before us today is incredibly important. It can help the 5,000-plus people waiting for a transplant to join the 50,000 now living thanks to organ donation. It is truly the gift of life, and it deserves a smooth passage.
Lord Ribeiro (Con)
My Lords, I support the Bill and hope it will pass. I thank the noble Lord, Lord Hunt, and my noble friend Lord O’Shaughnessy for the briefings they gave us before today. However, I have a few reservations, which I will address shortly.
As we heard from the noble Lord, Lord Patel, the black, Asian and minority ethic—BAME—community is one group of patients most in need of a change in legislation. BAME people are often the most in need of transplants—particularly kidney transplants for renal failure due to secondary high blood pressure—but, for various reasons, they often refuse consent because of faith or cultural concerns. In 2017-18, 1,487 BAME patients were on the renal transplant waiting list, many as a result of high blood pressure—a particular problem for this ethnic group—but only 49 deceased kidney donors from BAME backgrounds to help out. That represents a fraction of the need. As a surgeon and an African, I understand the difficulties faced by BAME people in becoming donors. There may be religious, cultural or ill-informed reasons for saying no.
I have experience of working as a patron of Transplant Links Community, or TLC, a charity that has transformed the lives of many people in Africa and the Caribbean who suffer from kidney failure, especially children. Without transplantation, such people have to endure regular dialysis, often three times a week, which can be challenging in a rural setting and extremely expensive. The charity was founded by two kidney specialists from Queen Elizabeth Hospital in Birmingham: Dr Dwomoa Adu, a fellow Ghanaian and a nephrologist, and Dr Andrew Ready, a transplant surgeon.
In 1974, Dr Adu and I worked in the renal service at Korle-Bu Hospital in Accra, Ghana, the hospital chosen by the Birmingham team for their first live-donor kidney transplant in Ghana in 2007. We have heard about a boy called Max, but Felix, the young boy on whom this transplant was performed, has completed a chemistry degree and hopes to become a doctor. The programme has now been extended to Trinidad, Jamaica, Barbados and Zambia and is supported by my fellow patrons, the noble Baroness, Lady Benjamin, and my noble friend Lady Cumberlege. By their very nature, live-donor transplants can help only a small number of patients, while cadaveric donation has the potential to help many by offering more than one organ for transplantation.
As a surgeon working in the UK, I know how difficult and distressing it can be to approach the deceased’s family with a request for organ donation, often after heroic efforts to save the person’s life. As we have heard, it is not surprising that at this most sensitive time, some families say no—even if the deceased had indicated a desire to donate. Eight out of 10 patients on the transplant waiting list are hoping for a kidney; currently, 4,375 people in England are waiting for a kidney. A change from opting in to opting out will make an enormous difference and provide more organs for transplantation.
However, as the noble Lord, Lord Hunt, said, unless the infrastructure is improved, with more specialist nurses, transplant co-ordinators and so on, we will not see much change. The British Transplant Society warns that,
“assessments of the effects of opt-out laws on donation rates are hampered by differences in cultural attitudes, economic conditions, availability of intensive care units, numbers of transplant co-ordinators, degree of governmental support and other factors, whose influence may be important but uncharted”.
Spain, as we have heard, has the highest rate internationally of transplantations with the opt-out policy, but it introduced the system in 1979 and saw a significant increase only,
“ten years after the law was introduced. Much of Spain’s success is attributed to the establishment of a new national transplant organisation to co-ordinate the donation and transplantation process, including the appointment of transplant co-ordinators who instigate conversations with the family of potential donors”.
As I said, doctors faced with repeated rejections by families often fail to press the case and so opportunities are lost. We must invest in more staff as well as raise public awareness of the need to donate. The Government will, I am sure, launch a campaign to highlight the need for more organ donors. Public awareness will, we hope, lead to an increase in donors, especially from BAME communities, who face the greatest challenge with donations, as the noble Lord, Lord Patel, told us.
I started by referring to live-donor transplants. These reflect a personal commitment—a gift, as has been said, from one loved one to another. This altruistic giving should continue and not be impacted by the belief that it is no longer necessary as the opt-out programme will remove the need for it. Tissue- matched live-donor transplants give the best results and we must encourage families to continue to engage in the programme.
The noble Lord, Lord Hunt, referred to an organ donation consent rate in Wales of 77%. I have a publication here from the Welsh Government, dated 16 November, which suggests that Wales has reached the highest organ donation consent rate in the UK, at 80.5%. This compares to 66.2% in England, 63.6% in Scotland and 66.7% in Northern Ireland. This is the first sign of Wales’s opt-out programme working. It is time for us to catch up, but let us not assume that a change in the law will be the end of the matter, like waving a magic wand—it will not. It will require preparation and information to drive a public awareness campaign and I look to the Minister to tell us how this will be achieved. I can also tell the House that I have spoken to the president of the Royal College of Surgeons, who personally supports the Bill and will be raising it with his council in December.
The Lord Bishop of Carlisle
My Lords, the Church of England is wholly committed to both the principle and the practice of organ donation, believing as it does that giving oneself and one’s possessions voluntarily for the well-being of others and without compulsion is a Christian duty and that organ donation is a striking example of that. Like many other noble Lords, I am personally glad to have my name on the organ donor register. I was closely involved with the so-called fleshandblood churches campaign, which we ran in partnership with the NHS from 2012 onwards and added thousands of potential donors to the list. We therefore have absolutely no wish to be remotely churlish about this Private Member’s Bill which is so very clearly well intentioned, and with whose overall objectives we are in complete agreement. We are most grateful to the noble Lord, Lord Hunt, for bringing it forward.
However, I cannot let this moment pass without mentioning three caveats which have all been raised elsewhere and by other noble Lords but which bear repeating and need to be borne firmly in mind as the Bill proceeds. First, “deemed consent” is not some sort of magic wand—as the noble Lord, Lord Ribeiro, referred to it—that will automatically increase the number of effective donations. More important by some distance, as we have been reminded, is the raising of awareness, the encouragement of conversations about this subject in families and a new willingness to talk about death. This was stated by the Bill’s author as one of its principal aims, but I do not see the Bill achieving that aim in itself. As some have observed, it could have the opposite effect. This would be highly unfortunate since, as we know, for understandable reasons, grieving relatives are often a stumbling block to donation, even when it was manifestly the deceased person’s wish.
My second hesitation is that our present system, which is referred to as a hard opt-in but is really a soft opt-in, reflects a very careful balance between individuals, relatives and the state, with a presumption that the state does not have a right to dictate either to individuals or their families how their bodies should be used. An opt-out system represents, whether it means to or not, a major shift in the state’s relationship with its citizens. The noble Lord, Lord Lansley, touched on this. As the Catholic Bishops’ Conference of England and Wales observed, an opt-in system emphasises the positive ethos of donation as a free gift with informed consent. Despite the assurance from the noble Lord, Lord Hunt, that the Bill is still very much about giving, this suggests that we need an overwhelming case that numbers of lives saved or enhanced would be significantly increased. That overwhelming case would have to be made before a change of this kind is introduced.
That brings me to my third caveat. There is at present, I suggest, no overwhelming case. The evidence, such as we have, is rather ambivalent. I fully acknowledge the February 2018 BMJ article cited in our Library briefing, which says that Wales has seen more registered donors and fewer family refusals than any other part of the UK since the introduction of the opt-out system in 2015—the noble Baroness, Lady Finlay, and the noble Lord, Lord Ribeiro, referred to the very high consent rate in Wales. However, at the same time, as the same briefing records, the Welsh Government indicate that, as yet, opt out has had no impact on the number of actual organ donors in Wales. It is three years on: perhaps we do need to wait 10 years, as the noble Lord, Lord Ribeiro, suggested, because at the moment the evidence is not clear.
I note the comments of the highly regarded Nuffield Council on Bioethics, which is concerned that making a legislative change based on poor evidence risks undermining public trust in the organ donation system. Indeed, as we have been reminded, especially by the noble Lord, Lord Ribeiro, examples from countries such as Spain indicate that improvements to transplant protocols and procedures are more important than a change to the consent system. That is why the Church of England would prefer to build on the current opt-in model to increase the number of organ donors and transplants. However, we accept fully the head of steam, as it were, behind the Bill and will certainly not oppose it. None the less, we ask that in the almost certain event of its successful passage three very important considerations are taken into account.
The first—we have heard a great deal about this already—is that there should be very good communication, not least in schools and in BAME communities, where, as we have heard, the need for donors and transplants is often greatest. We heard some statistics on this from the noble Lord, Lord Patel. The second is that adequate resources should be made available for the implementation of this new system, including specialist nurses for organ donation. That has been mentioned by almost all noble Lords who have spoken. The third is that more effective use should be made of potential donors, in ways highlighted by the transplant pathway. Only then do we believe that the pressing need for more organ donations will be met.
Lord Oates (LD)
My Lords, in speaking on this Bill, I should first declare my interest as a non-executive director of NHS Blood and Transplant, as set out in the register of Members’ interests.
There are many people who deserve credit for their role in this legislation, but as a number of noble Lords have said, the most profound recognition and honour should perhaps be given to Keira Ball and Max Johnson. Keira, as many noble Lords will know, died tragically at the age of nine in a car accident. During a time of unimaginable grief and shock, and with his wife also seriously injured, Keira’s father agreed to organ donation. Keira saved the lives of four people through that precious gift. One of those patients, as we know, was Max Johnson, who received her heart. His campaign was instrumental in inspiring this Bill that we are debating today.
As the noble Lord, Lord Hunt, stated, we also owe a huge debt to Geoffrey Robinson and Dan Jarvis, who introduced the Bill in another place. We also owe a debt to the noble Lord, Lord Hunt, who has brought this Bill before this House.
As many noble Lords have also recognised, every year hundreds of people continue to die while awaiting a transplant, due to lack of availability of organs. Hundreds more come off the transplant list because their health has deteriorated so greatly that they cannot receive a transplant. The noble Lords, Lord Lansley and Lord Ribeiro, and other noble Lords are of course absolutely right that the Bill on its own will not change that, but the experience in Wales demonstrates that such a Bill, accompanied by effective communications—and most importantly, a public debate and family conversations—can mark a profound shift. The latest figures from Wales have shown such a shift, and I pay tribute, as other noble Lords have, to my noble friend Lady Randerson for her part in that process.
Already, there has been extensive engagement from the public in England as a result of this Bill being brought forward. Over 17,000 people responded to the public consultation, a figure that is well in excess of normal response rates to government consultations. NHSBT’s ongoing public surveys indicate that over 80% of the UK population supports organ donation. As part of the consultation process, NHSBT also undertook work to seek the views of those who are most closely involved in the donation process: intensive care clinicians; clinical leads for organ donation; and specialist nurses for organ donation. Over 700 responses were received. The results show that over 76% of respondents supported the change in legislation. There are also many people who not only responded to the formal consultation but who have given further help to review and scrutinise the Bill to ensure it achieves its objectives without adverse or unintended consequences. The contribution of the faith communities has also been critical.
So the Bill has the support of the public, it has stakeholder support and it has medical and nursing support, and that support will need to be honoured by doing everything possible to make sure that every family of every single potential donor is approached and, where consent is in place, that every single organ that can be safely transplanted is transplanted. First, there is the importance of the communications strategies and campaigns, which have been spoken about already as having been important in Wales, that can raise awareness of the change in the law and encourage conversations in families, so that people have an understanding of the new legislation and also have reassurance that the decision still lies with the individual. Secondly, there is a need to ensure that the infrastructure is in place to manage the increase in donation and transplant activity. Medical and nursing teams need to be able to keep pace with the anticipated rise. Thirdly, we need to ensure that everything is done to use all organs that are donated.
It is anticipated that the change in legislation will increase the availability of organs from donors after circulatory death, from whom currently fewer organs can be successfully transplanted. Organ usage from these donors can be dramatically increased if the retrieval teams are able to use technologies that preserve the organs. For example, between February 2015 and July 2018, the introduction of machine perfusion for hearts led to 66 additional hearts being available for transplant. Service evaluations for the use of abdominal organ machine perfusion also demonstrate significant increases in the number and quality of organs that can be donated. Using these new technologies will help ensure that no potential for a safe transplanted organ is missed.
The fourth and final approach needed to deliver successful change is to continue to publicly recognise and celebrate organ donors in the way that a number of noble Lords have already mentioned. Organ donation is the last, greatest gift that anyone could possibly give. It is giving the gift of life and it must continue to be celebrated, even when this Bill is passed.
During the debate over the proposed changes to the law, a number of important issues have been raised by the public and a variety of stakeholders, particularly around family and faith. The public and stakeholders have been very clear that it is vital that the family should continue to be involved in discussions regarding organ donation after a change in the law. As the noble Lord, Lord Hunt, made clear, that must, and will, always remain the case. The next of kin of potential donors will always be approached prior to donation. If the family is not present when the patient first enters hospital, the NHS goes to great lengths to find them. That starts when the ambulance crews first arrive at the scene and continues until the next of kin can be found. If necessary, the police are asked for their help, and other records such as passport applications are checked to identify next of kin. Where there is no family, others are approached, such as friends of long standing.
Family discussion is vital for three reasons. First, it is the right thing to do. Secondly, speaking to families is necessary to determine whether their loved one would have wanted to donate, and that will continue. Thirdly, information is needed from the family regarding past medical and lifestyle information. Without this, it is much more difficult to determine whether it would be safe for retrieved organs to be transplanted.
Many noble Lords have paid tribute to the specialist nurses and highlighted their importance in this process. They are vital, and anybody who has had the privilege of speaking with them about their work will know their dedication to the very difficult job they do, in such a professional, sensitive and caring way. They ensure that, as far as possible, the family are given sufficient time to consider organ donation. NHSBT data shows that family consent rates are significantly higher if a specialist nurse is involved in the family approach.
Families are also aided by knowing whether their loved one had recorded a decision on the organ donor register. The consent rate is 92% if the family know that their loved one had recorded a decision to donate on the register. It will remain important to encourage people to register a positive decision. The family will always be asked for their views on whether any special considerations should be taken into account, including whether their loved one had a particular faith or beliefs and whether the family would like to speak to a faith leader or counsellor.
Finally, there are strict policies and protocols in place to safeguard the process, with many checks throughout the donation, retrieval and transplant process. Consent is checked on multiple occasions, by several different medical, nursing and support teams. NHS Blood and Transplant is audited and inspected on this aspect by the Human Tissue Authority.
In conclusion, it is absolutely right to say that this Bill, in itself, is not a panacea, but it is an important contribution. It will help start the debate and deliver—in the way that has been shown in Wales—profound changes, we hope, in levels of donation. I pay tribute to the noble Lord, Lord Hunt, and to all those who have brought this Bill forward. I recognise the work of officials in the Department of Health and Social Care, and the great work that has been done by the Minister in another place, Jackie Doyle-Price, and the noble Lord, Lord O’Shaughnessy. Most importantly, our tributes, thanks and recognition should go to the donors and their families, whose decisions are the gift of life. We hope that this Bill will allow far more people to benefit from such donations.
Baroness Sater (Con)
I thank the noble Lord, Lord Hunt of Kings Heath, for his sponsorship of this Bill. I also pay tribute to all those here and in the other place for their tireless endeavours so far on this important matter. That it has cross-party support in both Chambers is also very welcome and will, I hope, facilitate smooth passage into law.
My Lords, the briefing for this debate has been clear and informative, so I will not take up time telling the House that which they already know. The stats are deeply distressing and concerning, as many noble Lords have mentioned today. As the noble Lord, Lord Patel, mentioned, three people die each day due to a lack of suitable organ donation. Over 6,000 people across the United Kingdom are actively waiting for transplants that will save or significantly prolong their lives. On average, those from ethnic minority backgrounds may wait much longer than others for a suitable match.
It was as a trustee of the British Lung Foundation that I became aware of the crucial need for and success of organ transplants and their transformational effect on not just those whose lives they saved, but their families and friends as well. The saying “a new lease of life” never rang more true. But I confess, my support for the British Lung Foundation may not have come about had I not witnessed my own mother succumb to emphysema some years before. It was heartbreaking to watch my much-loved mother’s most vibrant life deteriorate, to the extent that she struggled to simply breathe. An organ donation would not have saved her, but what we do know is that today there are hundreds of people afflicted with lung disease, and many whose condition could be improved or life saved by a transplant. It is right that we do all we can to finalise and pass this very necessary Bill, but also provide the sustainable environment in which it will need to operate.
I was pleased to note that the money resolution for this Bill was passed in September. It is important recognition of the additional work an opt-out system would require and the costs that will need to be borne by the NHS and its blood transfusion authority, for example. I recognise and respect the absolute right of individuals to opt-out of organ donation, and we must make it easy for those people to do so. Establishing the practical infrastructure for those who do wish to follow through is also vital. Funding for these elements is indeed key. The United Kingdom has a very low level of organ donation consent—a sobering point which illustrates a great and profound need for a public awareness and education campaign on this subject. Both here and in the other place, attention has previously been drawn to the example set by Spain, whose noteworthy successes in this field include both educating its people and reaching families who wish to override consent previously given.
When considering the Bill’s financial implications, I would encourage the Government to continue reflecting on the huge importance of public awareness. It is at the age of 18 that a person becomes eligible to determine whether or not they opt out of organ donation. In order to make an informed decision and ensure their wishes are carried out, they must be able to speak with ease about it to their families, friends, teachers, doctors, faith leaders and so on. The only way to ensure that everyone is comfortable having this conversation is by giving them the knowledge they need through open, transparent and easily accessible means. Public health campaigns have had significant impact and huge success in the past, but invariably they require co-ordination across government portfolios and the money to back them up. It would be devastating to win the day but lose the battle because of a lack of information.
I am delighted the Government are supporting the Bill. I feel grateful to be able to play some small part in furthering the cause today and I look forward to supporting the Bill going forward.
Lord Elder (Lab)
My Lords, I rise to support the Bill and, in doing so, congratulate my noble friend Lord Hunt on his role in this and Geoffrey Robinson, in another place with other colleagues, for introducing a timely and important Bill.
I start by declaring something of an interest. As many of you will know, I am a recipient of a heart transplant myself. I was reflecting recently that, when I had my heart transplant by the excellent team led by John Dark at the Freeman in Newcastle, all those years ago, they said that the half-life of a transplant patient was about seven and a half years and I would be very lucky to last 30. There was the important rider of a new drug being introduced and, with a bit of luck, that would improve things. I do not know what has happened but, as that was now slightly over 30 years ago, I am particularly grateful for developing technologies in this area.
All I have done and been able to do over the past 30 years has been the by-product of a decision of either an individual or their next of kin, or both, to allow someone they did not know to benefit from the tragedy that they were facing from the loss, often sudden, of a loved one. So I come to this debate knowing and understanding the benefits for the patient or the recipient of a transplant, but of course I am very conscious that every recipient is one part of a process that involves either an individual making a commitment to the transplant programme by saying that, should their life be cut short, their organs should be used to help others to live—an act of great generosity—or, if not them by them, by their next of kin or others, so that others could benefit from their tragedy.
I appreciate that a register is important, but nothing is quite as important, in my view, as speaking to friends and relatives, and having an understanding of what they want and how to do it. This can mean either that the donor has made clear directly their view that their organs should be used or that the next of kin takes that view themselves. It can also mean people taking a decision in the most difficult of circumstances. For many, the decision will be sought at the point when all they can think of is the need to mourn, to cope, and to help their family and friends to do likewise. The danger is that if they take the entirely understandable decision to leave the decision about transplant for later, it will not be possible, because it is too late. I pay tribute, as others have done, to the members of the transplant teams—the co-ordinators and specialist nurses—who have the crucial and difficult task of talking to families, on both sides of the process, and taking them through the fraught times they are facing. They are vital to the success of the scheme.
Of course, as a recipient of a transplant, I support the Bill. It is not because it will transform everything—it will not—but because it is another essential step in making the process of transplantation more accepted, better understood and more common than it is at the moment. This may mean not just this change of policy; I hope it will not be the end but the continuing of a serious attempt to have a public, open discussion and argument about the importance, understanding and benefits of signing up to the transplant process, and all that that means for individuals, their families and friends.
What the Bill does not mean is a change to the position whereby, if anyone has made clear their wishes not to have any part of the transplant programme, they should not be overturned. But it opens the way for those who have not made their views known, still to be eligible, with safeguards, for their organs to be used in the event of their untimely death. It should therefore increase the number of transplants possible and reduce the number of otherwise avoidable deaths from the lack of available organs. For that it has to be supported. As I say, it will not end all problems, but it will be a step change in the movement to what some of us think would be a more rational use of the bodies we have been given after these bodies have ceased to be of use to us. I wish the Bill well.
Lord Leigh of Hurley (Con)
My Lords, I join in the congratulation to the noble Lord, Lord Hunt of Kings Heath, on his promotion of this Private Member’s Bill. This is of course a very difficult and sensitive subject. First, one must recognise the importance, for those awaiting transplants and their loved ones, of increasing the number of donors as much as we can. I note that the number of donors has been steadily increasing, both in absolute amounts and as a percentage, for the last 10 years—from 771 in England in 2008-09 to 1,349 in 2017-18—and this is of course very welcome.
I have no medical training whatever but I wish to draw your Lordships’ attention to my register of interests, which discloses that I am a vice-president of the Jewish Leadership Council and the president of Westminster synagogue. As such, speaking as a progressive rather than Orthodox Jew, I point out that, as some of your Lordships might be aware, as in many religions there are many strands within Judaism. The Orthodox community would probably be guided by the traditional biblical prohibitions against making any cuts to a body. The body is regarded as a holy vessel, because it has housed a soul created by God. The body therefore has to be honoured, as much as if it still contained a living person. However, I have discussed this matter directly with the Chief Rabbi, Ephraim Mirvis, and he believes that all Jews would temper that view by recognising that there is a higher value of saving a person’s life, and that that trumps all considerations.
Needless to say, every rabbi has a view and the old saying that for every two Jewish people you will find three opinions seems as valid in this field as any other. I am also a member of Hurley’s local synagogue in Maidenhead. The rabbi there, Dr Jonathan Romain, points out that there is the issue of personal autonomy and the fact that our body belongs to us, not to the Government or the NHS. So while it may be very worthy to donate organs after our death, we alone should make that choice. This was before he concluded that whatever the ethics of personal autonomy, and despite biblical objections to making cuts to the body, saving life is the highest objective.
Other rabbis, particularly Rabbi Sylvia Rothschild, point out that, ethically, for any medical procedure a person should be informed about and understand what is to happen, including any risks, and should consent explicitly to each procedure. That would not be possible with an opt-out system, which she encapsulates by pointing out that presumed consent would arrogate to the state rights that were hard won, including the right to own and make decisions about our bodies. The right reverend Prelate the Bishop of Carlisle pointed this out. But she goes on to say—and others make this point—that perhaps the better way to increase the number of organ donors, which I believe currently stands at 24.9 million, is to invest in educating the public to understand the importance of registering if they wish to be a donor.
I am, however, supportive of this Bill, mainly because of the letter that the Minister, Jackie Doyle-Price, wrote to the president of the Board of Deputies of British Jews on 25 October in which she stated that,
“organs and tissue will not be taken without full consultation with persons in a qualifying relationship”.
The Minister specifically stated in that letter:
“There will always be a personal discussion with the family and full consideration … given to the views of a person’s loved ones”.
I thank her for that clarification but it does of course raise certain questions. First, should not this commitment be in the legislation rather than a side letter? Secondly, if this is to be a requirement, do we need the Bill? If in every case there will be a consultation before organ donation, which the letter confirms will require organ donation staff to go to extensive and far-reaching lengths to speak to family members, the opt-out does not really seem to change that much—particularly as there is a commitment that if family members cannot be reached, organs will not be taken from the deceased. I understand and am reassured to know that NHS organ donor teams will in any event need to talk to families as a matter of best practice, to try to determine whether the deceased had any allergies, history of drug abuse or other medical issues.
Leaving my reservations aside, I look to the Minster to confirm today that the terms of this letter will be honoured in full. This commitment is very important; of course, it raises some unresolved issues. For example, some families, such as mine, are mixed. My mother is Orthodox and may have reservations about organ donations, while other family members do not share this view. How will a consensus be reached? If any one person has reservations, will there be a prohibition? It is very hard for someone to determine another person’s faith and ethical views, and rational analysis of what a person would want could be very difficult and stressful at a moment of grief. It is much easier if the deceased has chosen to donate organs by opt-in, but that may be impossible, in reality, if we move to an opt-out system. Accordingly, we need legal recognition of the organ donor register, which is not in the Bill. Indeed, recognition is needed of other first-hand wishes, like the codicil of a will, which frequently specifies such matters in addition to selecting preference on the nature of burial or cremation.
In conclusion, a person’s decision to donate their organs to save the life of another human being is a wonderful act of humanity which deserves the utmost respect and support. Giving the state the right to take those organs, and depriving individuals of the ability to do so as a gift, is a very big step for our society to take. It must therefore carry with it respect for people’s ethical and religious views. I personally would not stand in the way of this Bill, but seek at this Second Reading the assurance from the Minister that I have set out in my remarks.
Lord Carlile of Berriew (CB)
My Lords, I too join in congratulating the noble Lord, Lord Hunt, and indeed the two colleagues in another place he mentioned, on bringing this Bill to Parliament. His characteristic modesty meant that he did not remind us of his enormous experience of the National Health Service, in the management context before he came to your Lordships’ House, as a member of the Government and as a Member of this House. That experience gives us some extra reassurance about the integrity of the Bill and what it proposes.
Debates such as this raise serious, and sometimes acute, ethical dilemmas. I think the ethical dilemmas in relation to the Bill are strongly affected by the fact that this issue is about saving life, not ending it. As your Lordships know from previous debates, I take a very different view on issues that affect the ending of life. I am happy to support the Bill, because it seems to make an entirely positive ethical contribution to the debates we have on such issues, perhaps uniquely, in your Lordships’ House.
I know that repetition rarely improves the quality of any argument. However, the support for the Bill, repeated from all parts of this House, and from all walks of life represented here, provides further important affirmation for it. We know that we are a somewhat unusual institution in this House; if a Martian were to walk in and look at the rules by which we come here, we would not pass the Martian test. Nevertheless, where else in the parliamentary world can we hold such ethical debates? Where else do we hear the kind of evidence that we are hearing in this debate? We very recently heard a wonderful speech from the noble Lord, Lord Elder, who told us of the heart transplant he had over 30 years ago. As we have seen today, it left him a very fit person: he has climbed more mountains than most of us have looked at. I hope he has also been able to enjoy some of the more traditional Scots remedies for exhaustion and other concerns.
We have also heard evidence from my noble friend Lady Finlay, who has spoken about the changes to the law in Wales and how effective they have proved. I think she gave some reassurance to the right reverend Prelate the Bishop of Carlisle about the increasing transplant figures in Wales.
I also look forward to hearing the contribution from my old friend the noble Baroness, Lady Randerson. She and I have known each other for many decades and I pay tribute to her determination. What she did in Wales on this issue was of great value, and I am sure she will provide very valuable evidence in a few minutes’ time.
That leads me to Wales. For many years I was an MP in a Welsh rural constituency and I am completely unsurprised that this system in the United Kingdom was first introduced in Wales. People in Wales tend to think more empirically than many in politics realise. Also, the devolution settlement in Wales, in which the noble Baroness, Lady Randerson, played a very important part, has made it much easier to bring to the statute book changes such as this in matters not reserved to the United Kingdom Parliament. Wales has been able, as has Scotland in some things, to be a trailblazer on this issue and has provided a great deal of evidence.
My belief is that the system in Wales has worked very well. My noble friend Lady Finlay described the advertising campaign, which means that everybody in Wales, unless they spend 24 hours a day asleep, knows about this system and it is discussed in families, as well as in more public forums in Wales. It has worked very well and has widespread popular support, as it will have in England.
I turn to the duties of the medical profession and return to something that the noble Lord, Lord Hunt, said at the beginning of his speech. He told us that he is fortunate enough to have just been appointed as a member of the General Medical Council. I was a lay member of the GMC for 10 years, albeit in its former incarnation as a much more parliamentary-style body than it is now. At the heart of the General Medical Council—I am sure this is true of the much smaller and very distinguished current council—are strong and heartfelt debates about ethical matters. The GMC translates those ethical decisions made by the council into guidance for doctors. If you look at its website, you come very quickly to the guidance currently given to doctors on after-death care and organ transplantation.
I say to the noble Lord, Lord Hunt, that one of the most useful things he can do in his first few weeks on the GMC is to persuade it that that guidance needs to be expanded somewhat so that the section relating to cadavers, parts of which can be used for transplantation, are much more explicit and so that the genuine concerns about that area are addressed. When doctors breach such guidance, of course it should be treated as serious professional misconduct which can bring the most condign remedies against them. However, for doctors to know where they are in these matters, it needs to be set out more explicitly.
The ethical responsibility is laid firmly on the regulator, the GMC, which passes it on to doctors. I hope that the General Medical Council will recognise that what I hope will be the passing of this Bill and the creation of a new system in England as well as in Wales means that it must be very vigilant about the behaviour of doctors in this area. There have been some horrendous cases—such as the Alder Hey case, which has not been mentioned so far in this debate—that have made one a little cautious about presuming that doctors can always be assumed to behave with superb ethical judgment. Sometimes they fail, and they need a stronger regulator to protect the public and themselves from such failures. I add that one of the principles that was often discussed when I was on the GMC was the responsibility of doctors to report other doctors who fall below appropriate standards. That failure, too, can be serious professional misconduct.
With those slight reservations, I support the Bill strongly, and look forward to England, once again, following Wales.
Baroness Brady (Con)
My Lords, as always, it is an honour to speak here and to follow such knowledgeable contributors as we have heard today. I congratulate the honourable Member for Coventry North West from the other place on a well-targeted, balanced and proportionate Bill, and of course I congratulate the noble Lord, Lord Hunt, on bringing it before us today. After all, on such a sensitive subject as organ donation, when there is any action or intervention from the state or a change in policy, change must be proportionate, justifiable and properly communicated.
We have all heard about the virtues of “nudge economics”, and indeed have seen its success in areas such as the opt-out for workplace pensions, which has had such an impact on saving rates. But of course, organ donation is more sensitive than pension savings, so we must tread carefully. The Bill does so. It does not impact on children or minors, or those who have already opted in, and, significantly, it will not impact on those who have not consented where reasonable evidence can be presented by the family that they would not have wished to be a donor. It concerns only those who have thus far taken no action to specify their wishes. This is a proportionate approach, and I hope that those in any doubt can be persuaded by considering the consequences of the Bill.
Quite properly, the Bill focuses on the treatment of and the impact on donors and their families. However, the benefits will be felt by the recipient, and those benefits are nothing short of the gift of life itself. We have heard today that three people die every day waiting for an organ, and thousands languish agonisingly on waiting lists. Upliftingly, however, statistics from 2017 estimate that 50,000 people—I emphasise that—are alive in the UK today because of organ donation. This is the impact that changes in policy towards donors must be weighed against. But enacting this policy change—which I believe we must do—should be only the first step. It needs to be followed by communication and campaigns to highlight the benefits—the life-changing, even life-preserving, impact that organ donations can have. This is for two reasons.
The first reason is to raise awareness and bolster support for the changes in approach. Changing to an opt-out regime should not be seen as an opportunity to take people by surprise. Even if, as I hope, the default position changes to opt-out, we should still try to deliver a regime that is as close to informed consent as possible. Secondly, the object of the Bill is to increase the number of organs available for donation to help preserve life. It should be noted that, for example, the US has very high rates of organ donation under an opt-in regime, while Greece on the other hand languishes near the bottom of the league tables despite having a similar opt-out regime to the one we are proposing today.
My point is that policy change is the beginning, not the end. There are cultural factors at play that we need to understand and speak to if we are to achieve the ultimate aims of the Bill, which are to boost organ donation while treating organ donors fairly and with respect. However, I am optimistic. As we have heard, Wales has seen an increase from 58% in 2015 to over 70% in 2017, since it introduced the opt-out regime, which surely gives us comfort that the Bill will be impactful and will change lives, especially if it is accompanied by a national campaign that can preserve confidence in the regime and boost organ numbers still further.
The British Medical Association is in favour of this change. Its members see the tragic consequences and wasted life every day caused by the status quo—consequences that can be mitigated by the Bill before us today.
Baroness Deech (CB)
My Lords, at first sight this Bill is welcome and straightforward. It certainly is welcome, and appreciation is due to the noble Lord, Lord Hunt, and to all those who have promoted it.
I admit that my views are coloured by having been chair of the Human Fertilisation and Embryology Authority, dealing with associated but by no means identical matters. During my tenure, we had to deal with the Diane Blood case, where sperm was removed from her husband just before and just after his death without any consent. Of course, consent is absolutely central to the Human Fertilisation and Embryology Act. The lack of consent was got around by referring in part to the European law on the free movement of goods and services, which apparently included sperm. Nevertheless, the removal of the sperm was a flagrant breach of the law. The law was re-emphasised in the later statute, which pointed out that one cannot take anything from a body, alive or dead, without consent. This Bill goes the other way. Of course, sperm is not an organ, but I thought I should refer again to this notorious case, which highlighted the importance of consent.
As has been said, the BMA supports the shift to an opt-out system. In Wales, which has an opt-out system, consent rates rose from 58% to 72% in the two years to 2017, albeit reflecting very small numbers. So I give a hearty yes to the principle, but with a few words of caution and support. The BMA calls for the appropriate,
“publicity and engagement with the public”.
It highlights the need to balance increased donation with,
“the wishes and autonomy of those who donate”,
and their families.
Somewhat surprisingly, the very expert Nuffield Council on Bioethics did not originally recommend a change to an opt-out system, because, as it said, there was a,
“lack of evidence that such a change alone would increase organ donation rates”,
and because of ethical concerns about the operation of the scheme. Now, the Nuffield Council, accepting the situation as it is in this Bill, emphasises how it can be made to work ethically. It says,
“it is vital to have measures in place that encourage people to express and document their wishes about organ donation during their lifetime”.
A free choice in this or any other field is only legitimate if people are well informed and aware of the significance of their choice.
The Nuffield Council further says that,
“information about the donation process must be easily accessible”.
It is not enough to have a publicity campaign when this Bill is passed. It needs to be maintained on an ongoing basis so that those who might donate, but are not thinking about it now, are as aware in the future as those who benefit from the publicity that will no doubt accompany this Bill’s success.
The Nuffield Council also says that families must,
“stay at the heart of the decision-making”,
process, and that their refusal of consent should be respected even where the deceased indicated a willingness to donate. To appear to have lower regard for the wishes of the family in their moment of bereavement would make their dilemma even more poignant and might make others suspicious of what might happen when a loved one dies.
The Nuffield Council suggests that a solution is to invest further in the network of specialist nurses for organ donation, who can support bereaved families. So the Nuffield Council is opening up the debate to the wider context and emphasising the need to maintain trust in the system. This is important when one recalls the Alder Hey scandal of retained organs 30 years ago, which led to the Human Tissue Act and dealt a serious blow to public trust in the handling of tissues and organs by hospitals—trust which has only now recovered and should not be risked again.
I should point out that one can also foresee legal disputes over the meaning of the provision in the Bill that there is no deemed consent where friends or family provide information that would lead a reasonable person to conclude that the deceased would not have consented to donate in his lifetime. That is in Clause 1(4) inserting the new subsection (6B) into the Human Tissue Act 2004. Any legal delay in decision-making would necessarily be fatal to the successful removal of the organ, which has to be done swiftly. I envisage that any information brought forward at the time of death that the deceased might not have consented, reasonable or not, would act to stop the removal.
There were also concerns on the part of faith groups, which I believe have been successfully addressed and handled. The Government should be thanked for listening. In Judaism, as the noble Lord, Lord Leigh, said, there is nothing more important than saving a life. Religious strictures yield to that, and donating organs is invaluable. Jews and some other faith communities have a commitment to bodily integrity that extends through life to death. Therefore it is critical for them to retain an element of donor and then family control in the system.
The letter from Ms Doyle-Price, Parliamentary Under-Secretary of State for Mental Health and Suicide Prevention—what a bag of responsibilities she has—which the noble Lord, Lord Leigh, referred to, was sent to the Board of Deputies of British Jews, dated 25 October, and was very welcome. The Board of Deputies represents mainstream Judaism. In that letter, the Minister confirmed that the concept of deemed consent applies only in the absence of a decision by the deceased or their appointed representative to consent or not consent, and that the method for signifying non-consent is not limited by the Bill.
The letter also said that, if an individual cannot be identified or a person in a qualifying relationship cannot be found, the organ donation will not take place, since they have to be consulted. Individuals will also be allowed to consent to donate organs selectively or conditionally. And a new faith option will be included in the organ donor register, where organ donors can request that their faith is taken into account when organ donation is in issue; the text on the register will say, “I would like NHS staff to speak to my family and anyone else appropriate about how organ donation can go ahead in line with my faith or beliefs”; and appropriate agencies will engage with faith and minority communities in developing guidance that addresses those concerns.
This letter provided faith and minority communities with the comfort that the change in the organ donation system will respect beliefs while helping to save lives. Along with the noble Lord, Lord Leigh, I ask the Minister to confirm that those assurances will be upheld.
Lord McColl of Dulwich (Con)
I too congratulate the noble Lord, Lord Hunt, on bringing this Bill through. I should declare an interest as a former transplant surgeon. I found kidney transplantation the most exciting operation that I did in my 50 years of surgery. Kidneys would be flown in from all over the place in order to try to achieve a good match. One would connect up the vein and then the artery and to my surprise I found that some of the kidneys would start peeing on the table immediately, which was wonderful, but I noticed it was only the French kidneys that did this. I asked what it was about these French kidneys, and they said, “It’s the French wine, you know”. Well, in fact there were other factors involved.
At present, around 6,000 people are on the UK transplant waiting list, and last year over 400 people died waiting for a transplant. With so much at stake, it is not surprising that the question of how the donation system should operate is a source of strong emotion. The increased public awareness of the great benefits of donation is to be welcome, but—and there is a “but”—I have been rather taken aback by the way in which the evidence of what works, even the facts about the current law, has been manipulated and inflated by the media, in parliamentary debate and even in the consultation materials themselves. I do not think this is the way to support and maintain trust in our transplant system, nor to demonstrate commitment to evidence-based policy.
The 2011 Nuffield report, Human bodies: Donation for Medicine and Research, which has been mentioned quite frequently, strongly supported organ donation,
“where this is in accordance with the wishes of the donor”,
but it did not advocate a change in the current law to the opt-out system. Nuffield concluded that,
“such a system could be ethical, as long as a number of potentially onerous criteria were met. People need to be fully informed in order to be able to make an active choice about whether or not to donate, which implies a long term and expensive commitment to public information and education. Families need to be appropriately involved—recognising not only that they are likely to have the best knowledge of their loved one’s attitudes to organ donation, but also that they themselves, in their bereavement, have a stake in what happens to the deceased person’s body. Critically, the system must operate in a way that ensures that public trust in the donation and transplant system is not undermined, for example through perceptions that the state is intervening to ‘take’ organs against family wishes. We only have to look back two decades to the outcry caused by tissue retention in the NHS to be alert to the way in which trust can be undermined, not least by failing to take into account the complex family and personal meanings associated with the body in death”.
In considering these questions of trust, the report also assessed, in more general terms, whether such a change in the law would increase donation. As it said,
“the quick answer is that no one knows. In contrast with the claims (confidently asserted over past months) that opt-out will save ‘thousands of lives’, the Department of Health’s own Impact Assessment, published alongside the consultation document, described the evidence on the impact of opt-out on donation rates as ‘inconclusive’ … Despite all the emotional rhetoric, the jury is still out on whether changing the law in this way will make any difference at all to the numbers of organs available for transplant”.
In beginning to assess the efficacy of presuming consent, we have to confront a misunderstanding about how donation works in England today. All too often, the assumption is made that only those who have signed the organ donor register are potential donors. Given that just 37% of the population in England have signed the register, it is thought that a shift to presumed consent will increase the pool of potential donors dramatically. Even if 10% of the public opt out, one would still increase the total pool of donors from 37% of the population to 90%. The difficulty with this logic is that it fails to appreciate that, at present, it is not only those who have signed the organ donation register who can donate. As Answers to Parliamentary Questions I tabled in July demonstrate, most donations in England at the moment come from families of people who have not left instructions about what they want done with their organs. To put the same point another way, at the moment, most organs are donated by people who have not signed the register. Critically, this means that clinicians in England are not limited to a pool of the 37% of people who have signed the register—they can approach the families of 99.3% of people. The missing 0.7% relates to those who have signed the opt-out register in England, and cannot be approached.
Rather than increasing the pool of potential donors, moving to informed consent reduces it. Whenever consent is presumed, some people take offence and sign the opt-out register. In Wales, prior to the instruction of its deemed consent law in 2015, there was no opt-out register, so 100% of people were potential donors. As a consequence of introducing presumed consent, however, 180,000 people, or 6% of the population, have now opted out. It is no longer possible for clinicians to talk to families about donation, when previously they could all have been approached. The organs of those 180,000 people are simply lost to the system. Rather than increasing the pool of potential donors, the introduction of presumed consent in Wales has involved spending public money to reduce that pool from 100% to 94%.
The truth is that, regardless of what system is operated at the point of donation, the key player is the family. Not having signed the organ donor register does not prevent doctors talking to the family about donation. Presuming the consent of the donor does not enable doctors to avoid talking to the family about consent. It makes no difference whether the donor had signed the register or had his consent presumed. At the end of the day, they will be unconscious, and the key conversation must take place between the clinicians and the family. In this context, the focus of our attention should be, as many speakers have said, on the family.
We know from the detailed reports published each year by NHS Blood and Transplant that the key factors associated with high consent rates are support for families by specialist nurses, and families knowing what the deceased person wanted. Consent rates are as low as 27.5% when families are not supported by a specialist nurse. They increase to 68% when a specialist nurse is involved, and to more than 90% where families are confident of the deceased’s wishes, as the noble Lord, Lord Patel, the noble Baroness, Lady Finlay, and my noble friends Lord Lansley and Lord Ribeiro have already said.
This is consistent with the experience of Spain, which, as has been mentioned, has sustained the highest donation rate for more than 20 years. Rafael Matesanz, the leading light of the Spanish transplant system, ascribes the well-known successes of the Spanish system to its focus on efficient systems and excellent family support. He is on record as calling the opt-out system a “distraction”. Despite being classed wrongly by some as an opt-out country, Spain operates neither an opt-in nor an opt-out register, and relies entirely on family authorisation for the legal basis of donation.
The official evaluation of the Welsh law was published in November 2017, two years after it came into effect. It showed that if you compare the resident Welsh donor rate for the 21 months before the introduction of the new system with the 21 months since, far from increasing, the numbers fell slightly from 14.6 donation decisions per quarter to 13.4 donation decisions per quarter. This is less than encouraging. Admittedly things have since improved, but it will take at least five years to show any meaningful trend. In assessing that trend, it will be critical to allow for increased investment in specialist nurses in organ donation and critical care beds, which has nothing to do with presuming consent but will increase donation rates. The official evaluation concludes that longer period of time is needed to draw firmer conclusions about the impact of changing the law.
In the context of 400 people dying while waiting for a transplant, and when we do not have limitless public funds, I find the prospect of spending millions of pounds of public money on presumed consent rather concerning. Any money that we spend on presumed consent, for which we have no robust evidence of success, we cannot then spend on things that we know will increase donor donations. We should wait to see what happens in Wales and spend any additional monies on more specialist nurses in organ donation and more critical care beds. If the Government are determined to back this Bill, it will be imperative to limit the potential scale of withdrawal from donation by assuring people on the face of the Bill that their families will be properly consulted. This statutory guarantee of consultation must be genuine and not limited to simply giving the family a right to provide evidence that the family member did not want to donate, as in Wales.
Finally, I have another interest to declare. My daughter is a potential transplant recipient.
Baroness Randerson (LD)
My Lords, I thank the noble Lord, Lord Hunt of Kings Heath, for bringing this Bill forward, and for his excellent speech. We have heard moving contributions from across the House this morning. I want to thank the Government for their indication of support for the Bill. I also thank the noble Lords who chose to say kind words about me.
Of course, the important thing is that the greatest tributes must be paid to the donors and their families. There is, however, rare cross-party unity on this issue. That, you may think, is not surprising, because 80% of people say they would consider donation, but only 37% are on the donor register. Importantly, the percentage on the register from ethnic minority groups is a lot lower than that, and yet some of these groups face a greater than average likelihood of developing some of the illnesses that lead to the need for a transplant.
My party has supported this policy since 2002. At a personal level, I believe passionately that a system of presumed consent, a soft opt-out system, is the answer to addressing the gap between the number of donated organs and the number that we really need to save as many lives as possible. As the noble Lord, Lord Hunt of Kings Heath, indicated, I have some experience of this issue. As an Assembly Member in Wales, I was a member of the Health Committee. I was also spokesperson for my party on health issues in 2008 when the Kidney Wales Foundation and the BMA, together with other health groups, started to campaign for a system of presumed consent. I should declare that I was a trustee of the Kidney Wales Foundation from 2010 to 2012.
There was a well-co-ordinated campaign which had an impact on civic debate in Wales and on politicians in the Assembly. It led to the Health Committee deciding to do an inquiry. As part of that, we looked at evidence from across the world. We have heard a lot of statistics today but if you look at the evidence from across the world you will see that rates of donation vary considerably. But one thing you can draw out of it is that in countries with presumed consent, the rates tend to be higher than in countries without. When presumed consent is introduced, the number of donations increases over time as a percentage of the population.
As part of our inquiry, we also visited Madrid. Spain has been mentioned several times in this debate. There, we learned how soft consent works. We also learned that, as well as the legislation, you need the infrastructure to develop the system properly. You need improved training for staff as well as the best equipment. Meeting the clinicians, nurses and counsellors involved in the process in Spain had a huge impact and made us aware of the issues that we needed to tackle. In due course, after taking evidence from many groups, including patients and health campaigners, the Health Committee in the Assembly produced a report, which in fact at that point did not recommend a move to a soft opt-out system because some members were concerned that it might not be within the powers of the Assembly. These were early days for the Assembly and it was feeling its way.
Therefore, along with some other Assembly Members, we produced a minority report supporting a change to a soft opt-out system. Fortunately, the Health Minister at the time, Edwina Hart, was a lot bolder than some Assembly Members and decided to support the change, and she did excellent work in making it happen. It took a long time and years of consultation to get it right. The new Human Transplantation (Wales) Act was passed in 2013 but, even then, preparations took until December 2015, when the new system was eventually introduced.
I have some observations to make about that process. At the time, I was surprised at the extent to which the establishment—some in government and even some health organisations involved—closed ranks against the idea that the new Welsh Assembly could take such a radical path. It is a measure of how the debate has moved on—and I strongly welcome that—so that the Government now welcome it. In 2008, the Government’s Organ Donation Task Force, in its second report, unanimously opposed a change in the law. The UK Government have now accepted that the Welsh Government did indeed have competence to change the law. That happened during the coalition Government, when I was in the Wales Office, and it was not challenged.
In our original debates we were bolstered by the extent of the support from many faith communities. There were thoughtful contributions to the debate and overall support from faith communities. I very much hope that the right reverend Prelate the Bishop of Carlisle will study the Welsh experience in detail and look at exactly how much care was taken on the key and very important issues that he raised. The noble Lord, Lord Carlile of Berriew, is right that devolution in Wales made this a manageable initiative, with Wales being the first part of the UK to adopt the system. The noble Baroness, Lady Finlay, was right to emphasise the extensive public information campaign, and there has been no backlash, as some predicted. In addition, I emphasise that the public information campaign came not just from the Government but from third sector organisations, so it involved not just public money.
The fundamental objection is the fear of coercion. That has to be addressed through thorough information and careful explanation. It is called a soft opt-out system for a reason. By convention in this country we have always put the wishes of the deceased and their next of kin at the forefront so, whatever the legislation in this situation, it is important that that care over the wishes of the deceased and their relatives continues. You cannot rely on the law alone; you need a big investment in intensive treatment units and many more trained nurse counsellors. The conversation prior to or at the point of death is difficult but crucial. We cannot expect clinicians to do it as an adjunct to their work. Their mission is to save lives. It is very difficult for clinicians to be working to save a life at the same time as talking to the family about the point after death.
Difficult conversations need to be had as well in preparation in advance of death, where that is possible. Along with this approach to individual cases, you need, as several people have mentioned, a big national conversation, a campaign to encourage people to tell their loved ones what they want to happen to their body after death. I do not know if noble Lords have had those conversations. My son came out and told me that he wanted to donate his organs but I found it very much more difficult emotionally to raise that issue with my daughter, and it was the public information campaign in Wales that made me feel that I had a duty to discuss these issues within the family. So the open conversation is really important.
Evidence from Wales is also there to say that people also talk about not allowing cardiopulmonary resuscitation, which is often something on which there is confusion. Our system in Wales is being widely commended within the medical world, and we have evidence of overwhelming change in that too.
I want to spend a moment or two on the outcome because it is difficult to keep up when the situation is changing so fast. The Wales studies, prior to legislation, allowed for a 19% opt-out rate. In fact, as we have heard, it has been very much lower at 6%. At the same time consent rates in Wales have increased from 58% in 2015 to 72% in 2017, compared with 65% in England. Specifically, consent rates for brain-dead donors are now 89%, and for donors after circulatory death, donation rates have increased from 53% in 2015 to 68% in 2018.
The donation of eyes is always a particularly sensitive issue, and there is worldwide evidence to show lower rates of donation on those. The deficit between the number of corneas being donated and the number of transplants needed is increasing rapidly; it has gone up by 157% in five years. However, by increasing the donor pool across the UK we should be able in the long term to address that shortage.
Overall Wales now has the highest rate of consent for organ donation in the UK. There is also a hidden factor here that I draw to noble Lords’ attention: organs cross borders. There is anecdotal evidence in Wales that additional donations have helped in England, Scotland and Northern Ireland, and indeed beyond, in the EU, to produce better outcomes. The number of organ donors has gone up, from 60 in 2015 to 74 last year, and 44 in the first six months of this year. Wales has a population of only 3 million, so the numbers are necessarily small.
It takes time to build the new system but I am delighted that it looks now that, thanks to the change in Wales, things have improved there. I am very pleased indeed that it now looks as though, thanks to this Bill, England has the chance of following in the footsteps of Wales. I urge those who will, I hope, have the responsibility of introducing a new system to look carefully at the procedures and experience in Wales. As several of your Lordships have said, deemed consent is not the whole answer, but it is the golden key to unlock the door. This is an excellent Bill because, most importantly, it retains the key principle that organ donation is a gift, and it must remain freely given.
Baroness Thornton (Lab)
My Lords, I first congratulate my noble friend Lord Hunt on introducing this Bill and all noble Lords on an excellent debate. As the noble Lord, Lord Carlile, said, this is the place where we have these debates—sometimes they are painful, sometimes they are excellent and sometimes they are very enlightening. I also thank the Library and others who have given us such excellent briefings in preparation for this debate, including the British Heart Foundation, the BMA, Fight for Sight and many others.
I was heartened by many of the contributions we have heard today, including those from the noble Lord, Lord Lansley, the noble Lord, Lord Patel, who mentioned the issue of organ availability among BAME communities, and the noble Baronesses, Lady Chisholm, Lady Sater and Lady Finlay. As my noble friend Lady Crawley said, in a moving speech which I know was in part based on her family’s experience, the blessing of modern science, which allows lives to be saved, is not fully realised because of the lack of organs.
I also congratulate the noble Baroness, Lady Brady, on her contribution—it is a pity that she is not in her place now—and I welcome the speech of the right reverend Prelate the Bishop of Carlisle. I think I understood that the Church of England is now moving, as it ever does, in a slow and considered way, in what I hope is the right direction and ending up in the right place.
I particularly welcome the remarks of my noble friend Lord Elder, and his bearing witness to the successful outcome of organ donation, for which we are all—particularly those of us in the Labour family—very profoundly grateful.
I think the noble Lord, Lord Leigh, came close to suggesting that the Bill gives the state the right to take organs, but I do not believe that is the point of this Bill at all. I think, as many noble Lords have said, that this Bill is part of a process of shifting the debate, the commitment and the resourcing of organ donation as well as the thinking about what it means and how it should go forward. I congratulate the noble Baroness, Lady Randerson, on her pioneering work. Personally, I am very happy to follow Wales in this matter.
Without doubt, across the parties it has been agreed that the current law needs to be changed, and I believe that this Bill is the best first step forward in achieving the change we seek to move towards an opt-out system. With so many people who will benefit, it becomes difficult not to support this Bill and it is an honour to be able to support it. As my honourable friend Jon Ashworth said in the House of Commons, it is Labour policy, and I am very pleased to say that is the case. I congratulate Geoffrey Robinson MP and Dan Jarvis MP on the wonderful speeches they made in the Commons, and the Daily Mirror for its tireless campaign to bring about this change.
Like many noble Lords, I have been an organ donor for as long as I have been a blood donor and could sign the forms. All of my family are donors and we have discussed our wishes in this regard. This legislation will mean less ambiguity at what is probably the most stressful and sensitive time for family members. The idea that adults and children die waiting for an organ that could save their lives is painful and unnecessary. The gift of giving is part of our human condition. Following the death of my father-in-law, Henry Carr, I know that my family felt proud of and comforted by the fact that people benefited—at least two or three lives were transformed through the gift of organ donation.
Given that the Prime Minister and the Government have expressed support for legislation of this nature at various stages, I hope that the Minister can assure your Lordships’ House that the remaining stages of the Bill will take place early in the new year. Doing so will send a strong signal to the outside world and bring hope to many families across our country.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O’Shaughnessy) (Con)
My Lords, I join the noble Baroness, Lady Thornton, and the noble Lord, Lord Carlile of Berriew, in congratulating noble Lords on a superlative debate on a vital and highly sensitive issue. It is a credit to this House. I thank the noble Lord, Lord Hunt, for bringing the Bill to the House and presenting it in such an authoritative way. I also thank MPs in the other place, Geoffrey Robinson and Dan Jarvis, both for bringing the Bill forward and for their collaborative work with the Government on it. I thank them and everybody else who has worked so hard to get the Bill this far for their ongoing dedication.
As has been remarked, the passing of the Bill would mark a significant step towards transforming and saving the lives of hundreds, if not thousands, of people in the UK waiting for a life-saving transplant. As my noble friend Lord McColl said, what is at stake could hardly be more important. While we have made great strides in recent years, we can and must do better, as we were reminded by the moving story of the noble Lord, Lord Elder.
The Government are committed to the Bill. In October 2017, the Prime Minister committed to changing the current system of consent to shift the balance of presumption in favour of organ and tissue donation in England. Her position gained support from leaders of all parties and Members in both Houses, for which I am truly grateful. As I said, the Government welcome the Bill and support it wholeheartedly as an additional and necessary measure to address the tragic death rates due to the lack of organs and tissues available for donation. As the noble Lord, Lord Oates, reminded us, public support for higher donation rates is already there, as it is among critical organisations in the healthcare family. Our job as legislators is to put in place a system that responds to public demand, but in an ethical, practical and effective way. I think that the Bill succeeds in this regard.
As has been said, the passing of this legislation is neither a silver bullet nor a magic wand, but I believe that it will play a significant role in changing the culture towards organ and tissue donation in England. Like the noble Lord, Lord Hunt, I pay tribute to Max Johnson and the family of Keira Ball. Max, whose plight captured the hearts and minds of the public and whose bravery has been remarked upon, was fortunate enough to receive the gift of life from nine year-old Keira Ball, whose family took the extraordinary and generous decision to transform and save the lives of others by making her organs and tissues available to those in need. We should never forget the importance of such gifts. I want to be absolutely clear that under the new approach set out in the Bill, organ donation will be a most precious and joy-giving gift, to use the phrase of the noble Baroness, Lady Crawley.
NHS Blood and Transplant does tremendous work in recognising the generosity of donor families in various ways, including by awarding them the Order of St John. I reassure all noble Lords that celebrating donation will continue; it is an important aspect of making organ donation part of our culture. Enough gratitude cannot be given to families who, at a time of such grief, take the big-hearted decision to transform or save the lives of others. I assure the right reverend Prelate the Bishop of Carlisle that, as I said, organ donation will always be a gift; that will remain the case. The decision of donation will remain: everyone will continue to be able to opt in or opt out of donation. To save more lives, we will still need more people to take the positive step of registering their decision to donate, so that if they die in circumstances where donation is a possibility, their organs and tissues can be made available to help those so desperately in need and the family can support that positive decision.
I should like to reflect on some important changes made to the Bill in the House of Commons where, as has been remarked, there was broad cross-party support. A set of amendments were made in the other place, including a power to remove novel forms of transplantation, such as faces and limbs, from the scope of the Bill. On this point, I want again to reassure noble Lords that the Bill will not change the list of organs and tissues currently considered standard donation. These are heart, lung, kidney, liver, pancreas, bowel, and tissues such as corneas, skin, bone and tendons. To ensure consistency with Wales and the proposal in Scotland, I confirm that for the rarer, more unusual types of transplants, known as novel transplants, as we will set out in regulations, there will continue to be a requirement for express consent to be given for donation to proceed.
If, following advice from medical experts and NHS Blood and Transplant, there is a need to update the list of novel transplants, we will consult on the relevant regulations, which will be laid under the affirmative procedure so that there will be full parliamentary scrutiny. On the point made by the noble Lord, Lord Hunt, I can go further today and confirm that the Government will lay a Written Ministerial Statement after any changes are passed by Parliament to give absolute clarity on how regulations have been updated and what they mean in practice for deemed consent.
We all know that this change in the law is important, but it is not the whole story. Making sure that the public are aware of the change and of the importance of organ donation is the critical change. The consent system needs to be accompanied by a comprehensive public awareness campaign to give the public time to understand the changes, have a discussion with their family and make an informed decision about whether they wish to donate their organs and tissues. The Government will develop easy-to-understand material, kept up to date with information about the options, what organs and tissues can be donated and other details.
I take seriously the points made by the noble Baroness, Lady Thornton, the noble Lord, Lord Patel, and my noble friend Lord Ribeiro about the importance of this campaign reaching the BAME community. A campaign on that front started in July but clearly, we need to do much more and have much greater opting in and awareness in these communities. We have had some success on this front with blood donation; we need the same kind of success in these communities with organs and tissues.
On the point made by the noble Baroness, Lady Randerson, I can confirm that, following Royal Assent, working with charitable and other groups—and learning very much from the Welsh example—we will launch a 12-month communication campaign to support donation. The new system will go live in 2020, after the initial transitional communication campaign has ended. However, the Secretary of State will continue to uphold his duty to promote organ and tissue donation, as set out in the NHS Act 2006. We know that changing the culture around organ donation requires continuous engagement with the public and is not a one-off exercise. I can reassure the noble Baroness, Lady Deech, that we are committed to follow-up campaigns in the years to come, and the noble Baronesses, Lady Finlay and Lady Randerson, whom I applaud for their extraordinary work in Wales, that we are keen to learn from the Welsh experience what works and what, if anything, we can improve on.
Another issue that noble Lords have raised is the importance of the family. As my honourable friend the Member for Thurrock highlighted several times during the Bill’s passage through another place, one of its important aims is to encourage everyone to think about what they want to do and talk to their friends and family about their wishes, so that they are left in no doubt about what their loved one would have wanted. As the noble Lord, Lord Elder, said, no consequence of the Bill could be more important.
Of course, some find such conversations difficult, but the benefit is that in the sad circumstances when a family is involved in discussions with the specialist nurse following a death, they do so in the knowledge that they are doing what their loved one would have wanted. Registering a decision on the Organ Donor Register is the best starting point for that conversation, and the most effective, as the noble Lord, Lord Oates, reminded us.
When families have not spoken to their loved one about organ donation, they are much more likely to reject donation. Some families come to regret that decision when they realise that they could have helped someone who was still alive. But let me leave you in no doubt that, as now, there will always be a discussion with the family on the best way forward. To reinforce the point made by my noble friend Lady Chisholm and in reply to questions from my noble friend Lord Leigh and the noble Baroness, Lady Deech: no family will be forced to agree with the donation if they are strongly opposed to it. My noble friend Lord Lansley spoke from great experience about the importance of good guidance for staff when implementing this regime. I will turn to how we will deal with that issue shortly.
As has already been mentioned by the noble Lord, Lord Hunt, and my noble friend Lady Brady, I confirm that children under the age of 18 will be exempt from deemed consent. That does not mean that they cannot donate but, as is current practice, children of any age will be able to register if they wish to donate or not donate their organs; the parents of the child will always be asked about the child’s decision to donate.
A third issue raised today, and an extremely significant one, is the importance of working with faith communities. I was pleased to hear the noble Baroness, Lady Deech, recognise that the Government have made concerted attempts to work with faith communities to build safeguards into the new system. We have announced various specific measures in the Government’s response to the consultation. For example, from next month, a new option on the organ donor register will allow those who register to ask that their family, or anyone else they wish, has a personal discussion with nurses and doctors about how donation can go ahead in accordance with their religious and cultural customs.
I can state categorically, to reinforce absolutely the point made by the noble Baroness, Lady Thornton, that the state will not take control of anyone’s body as a consequence of this Bill. We will update the current codes of practice on organ and tissue donation for healthcare professionals; in doing so, we will set out how religious and cultural considerations will form part of the discussions with the family and we will involve the different faiths in its development. NHS Blood and Transplant will supplement this with training for healthcare professionals. That work is progressing well and I reiterate the Government’s commitment to working with all faith groups to make sure it is successful.
I mentioned the importance of a new code of practice to implement the new system that we hope to move to; that will be developed by the regulator, the Human Tissue Authority. The existing codes will be updated to reflect the changes and, for ease, we will pull them together in a single code, on which there will be a 12-week consultation period. The noble Lord, Lord Carlile, pointed out that there will also be important implications for the professional regulators. I am sure that the noble Lord, Lord Hunt, will also want to take that on board in the new role we are all pleased to see him playing.
The issue of the NHS’s capacity was raised by my noble friend Lady Sater and others. The Government recognise that it is absolutely necessary for the NHS to manage the increase in donations and to carry out these life-changing operations. My officials have already started early work on planning with NHS England and NHS Blood and Transplant to make sure that the system is ready for the changes. Following these discussions, NHS England will consider the financial and service commissioning implications, so that we have the capacity and expertise to benefit from increased donations.
I will address a couple of issues raised by my noble friend Lord Leigh and reinforced by the noble Baroness, Lady Deech. They asked about the letter written by my honourable friend Jackie Doyle-Price explaining how the Bill would work. I emphasise that the letter is not a supplement to the legislation; it is an explanation of how the system of deemed consent will work in practice. The points that she set out on this hold absolutely. With their permission I would be delighted to share the letter with all noble Lords who are interested in the debate so that they can see the reassurances that we have provided. I believe it will provide some of the answers to questions raised in the debate.
My noble friend also asked whether the organ donor register should be given explicit legal consent. I do not think that is a necessity as the system has been working successfully for 30 years. The Secretary of State continues to have a duty under the NHS Act 2006 to make arrangements to facilitate tissue and organ donation. We believe the system is there; it is about using it to the maximum of its potential.
Before concluding, I will talk about the most important issue of all in getting this right, and that is staff. Specialist nurses for organ donation are highly trained professionals, usually from an intensive care or emergency medicine nursing background. When nurses join NHS Blood and Transplant, they initially receive extensive training over a six-month period. This covers all aspects of organ donation.
A key focus of the training is to enhance nurses’ skills in supporting acutely bereaved and grieving families, as this is an important, indeed essential, element of their role. When a patient has registered their decision to donate or when a family wishes to donate their loved one’s organs, the specialist nurse will skilfully and sensitively navigate the family through the detailed paperwork and mandatory medical history taking. When the family does not agree with the donor’s decision, the specialist nurse is trained to help the family come to terms with that decision. Experience from Wales tells us that this works and I can reassure noble Lords that we will make sure that there are enough highly trained staff to make the most of the changes resulting from this Bill. Our current estimate is that 27 more nurses would be required but, of course, if that number were to rise, we would make sure that they are fully trained and fully financed for the future.
The Government are confident that this piece of legislation will be pivotal in helping to transform and save hundreds of lives. Deemed consent in Wales is already showing promising results, with many more families now agreeing to organ donation when approached for this important discussion with specialist nurses. For those noble Lords concerned about the evidence base for change, we have seen in Wales, as the noble Baroness, Lady Randerson, pointed out, an increase in the number of deceased donors, from 60 in 2014-15 to 74 in 2017. Indeed, she talked about there being 44 in the first six months of this year. So there is evidence for its effectiveness, and our Chief Scientific Officer states in the impact assessment for the Bill that he can say with “moderate certainty”, that systems of opt-out, when introduced with a range of other support, such as logistical support, public awareness and so on, do increase donation rates.
I just pick up one point made by my noble friend Lord McColl on providing an opt-out in the Welsh system which in theory reduces the pool of potential donors. That means that, beforehand, there could have been donors who were having organs taken from them when they were not happy for that to happen. If anything, the Welsh system has provided greater individual autonomy while also increasing the number of donations. That seems to me to tick both the boxes that we would want for any system. The evidence for that is very powerful and gives us cause for hope and encouragement.
I conclude by reiterating the Government’s support for this Bill, congratulating the noble Lord, Lord Hunt, on bringing it forward and thanking all other noble Lords for their excellent contributions. If any noble Lords have continuing concerns about any part of the Bill, I would be more than happy to meet with them to discuss it. The Government are very keen to make progress with this. There is of course a risk that, as the time towards the end of the session gets short, we will not manage that, which would be highly regrettable.
Lord Hunt of Kings Heath
My Lords, I thank the Minister for that very authoritative response and to echo what he said about the time pressure that we face. I also thank all noble Lords who have taken part in what the noble Lord, Lord Carlile, was surely right to describe as a very moving but also ethically and intellectually based debate. Where else indeed could we do it? I am also grateful to the noble Lord for his advice on the GMC. I realise I am not going to be short of advice, but I am in that glorious honeymoon period where I am not actually responsible yet. On 1 January, I might hide round some corners if I see the noble Lord coming.
This has been a very moving debate. Essentially, it is a celebration of the gift of donations to help others. I thought that my noble friend Lord Elder put so aptly what this really means to so many people in our country. It is also interesting that the noble Lords, Lord Patel and Lord Lansley, said that they had changed their minds. I am in the same camp. I was responsible for organ donation between 1999 and 2003. I also had to deal with the aftermath of the Alder Hey debacle and I well remember some parents having to go through three or even four burial ceremonies as more organs and tissues of their children were found. I have therefore always taken a very cautious approach to this issue but, like the noble Lords, Lord Lansley and Lord Patel, I have become convinced that it is time to make a change. The evidence for presumed consent is stronger, I think, and I am very grateful to the noble Baroness, Lady Randerson, for what she had to say. Public opinion has changed, and the infrastructure has improved immeasurably. We should acknowledge that in relation to capacity, transplant teams and specialist nurses, there have been very significant improvements. I welcome what the Minister said about future developments, particularly the increase in the number of these key specialist nurses.
All noble Lords—the noble Lord, Lord Ribeiro, the noble Baronesses, Lady Finlay and Lady Chisholm, and my noble friend Lady Crawley—have emphasised that alongside the change, we need to have a public campaign. The noble Baroness, Lady Brady, said something which I thought was really important: no one should be surprised by the change. I think we should set that as our aim in the campaign. This is not a waste of money; this will have a big impact to the good on the public.
I echo what the noble Lords, Lord Patel and Lord Ribeiro, said about the shortage of donors from black and minority ethnic communities. I welcome the campaign this summer; we just need to build on it. I also welcome the discussions with faith leaders and the assurances given by Ministers. I echo and endorse those assurances and the contents of the letter that the Minister referred to.
The noble Lord, Lord McColl, and the right reverend Prelate the Bishop of Carlisle expressed some concerns that this Bill will have the opposite effect to its intended one. The noble Lord, Lord McColl, has grave doubts about the figures used for outcomes. Clearly, this is a significant step change; I acknowledge that. The right reverend Prelate thinks the balance between individual families and the state will be disturbed by it. It is a change, of course, but I believe that, with the safeguards, there is still balance in the provisions, and the change is being made in line with public opinion and the improvements in the infrastructure.
On organ trafficking, I agree with the noble Baroness, Lady Finlay, but I do not think this Bill is the right place to debate it. I pay tribute to the noble Baroness, Lady Deech, whose distinguished work in the area of human tissues is unequalled. I agree with her about the need to maintain trust. She referred to the Nuffield Council and its comments about how to make this work ethically; I agree with the points about easily accessible information, families being at the heart of decision-making and the network of specialist nurses. We heard a really reassuring view from the Minister about how that will be taken forward; clearly, we need to hold the Government to account on that.
As my noble friend Lord Elder said, this Bill is not a panacea. It will not, by itself, lead to a large increase in donations. However, it is a step change. It will help to raise awareness, encourage family conversations and change the culture, and that will lead to a higher consent rate in England. In that way, hundreds of lives will be saved. I am convinced this is the right way to go.
Organ Donation (Deemed Consent) Bill
Friday 1st February 2019
(5 years, 2 months ago)
Lords ChamberRead Full debate Organ Donation (Deemed Consent) Act 2019 Read Hansard Text Amendment Paper: HL Bill 141-I Marshalled list for Committee (PDF) - (30 Jan 2019)
Lord McColl of Dulwich
“(6B) The consent of the person concerned is only deemed once a person in a qualifying relationship affirms that the person concerned would not have objected to the activity.””
Lord McColl of Dulwich (Con)
My Lords, I will begin by speaking to Amendment 1 and will then follow on to Amendment 3. I should point out that I am recovering from an operation—not a transplant—on my eye, and my vision is not as good as I hope it will be. In doing so, I declare an interest as a former transplant surgeon, and as someone who has a close relative currently awaiting organ donation for a far-reaching transplant operation. I also put on record my sincere thanks to the Minister in another place, who kindly met with me to discuss the issues that I will raise today.
The relationship between the patient and the doctor is very precious, but it only works because of trust. When trust breaks down, as it has in the past in relation to organ donation, the cost can be considerable. We need only think of the experience of Alder Hey to realise that, as we are really concerned about organ donation, we must tread carefully. Lest anyone should think that all is forgotten, I should tell the House that I received an email just a few days ago from an affected family.
The principal concern that those who work in the field of organ transplantation have about this legislation is its potential to damage trust between doctor and patient in a way that reduces the total pool of potential donors, for the reasons I explained in my speech at Second Reading. To recapitulate briefly, the key concern is that the introduction of deemed consent will reduce, rather than increase, the total pool of donors.
I will explain why. For anyone who is unfamiliar with the world of organ donations and assumes that only those who have signed the organ donor register can be donors, it is easy to see the huge appeal of deemed consent. If 37% of people have signed the donor register, then introducing deemed consent is clearly attractive; even if this provoked 10% of people to opt out, one would still be increasing the total pool of donors from 37% to 90%—a huge boost.
But this is not how organ donation works. At the moment, anyone in England can be an organ donor apart from the 0.7% who have signed an opt-out register. Crucially, you do not need to have signed the organ donor register to be a donor. In fact, as I set out at Second Reading, most organs donated in England in the past five years came from donors who had not signed the organ donor register or the opt-out register. The key to their donation was their family, who made the donation decision for them. Rather than increasing the total pool of donors, the introduction of presumed consent actually threatens to reduce the total pool of potential donors from 99.3% to something more like 90%—a small but not insignificant minority opt-out.
In Wales, over 180,000 people, all of whom were previously potential donors, have now withdrawn from donation. This equates to 6% of the population. All of those potential organs are now lost to the system. If we are to press ahead with this legislation, the imperative must be to do everything we can to minimise the number of people who take offence and withdraw from donation. That objective is at the heart of everything I have to say, and is particularly central to both of my amendments —Amendments 1 and 3. Rising to the challenge of limiting the number of people who opt out necessitates that we seek to understand why the introduction of deemed consent, and specifically the way in which it relates to the role of the family, provokes a significant level of withdrawal from donation, as mentioned a moment ago.
The principal reason why some people take offence is that they perceive deemed or presumed consent as a mechanism in law whereby the state can claim their organs without securing what they would regard as proper consent, and on this basis suggest that the state better represents the views of the deceased than his or her family. Mindful of this, it is important that we do not pass legislation that gives the impression that the state and its laws can better vouch for what the deceased would have wanted, rather than his or her family.
Neither the Welsh legislation nor the accompanying code of practice states that if the family objects because it does not believe that the deceased chose deemed consent, consent will not be deemed. In this context, these documents assert that the state effectively knows better than the family and, mindful that legal consent has been given, the door remains open for organs to be taken from people who the family believes did not choose to have their consent deemed, and who have signed neither the organ donor register nor the opt-out register. Happily, no doctor has availed themselves of this legal opportunity to transplant organs in the face of family opposition, but there is no statutory guarantee that this will not happen in the future. This is rather risky. It would take only one overzealous doctor to decide to take the organs of someone whose consent has been deemed, against the protestations of the family, for trust in the donation system to break down. It could put back the cause of donation many years.
Lord Anderson of Swansea (Lab)
The noble Lord, as always, puts his case very well. What is the position if the family is divided?
Lord McColl of Dulwich
My solution is to have transplant nurses, who are key to this whole problem. They are essential in dealing with the family, explaining the situation and getting it to discuss it in a sensible way. But I agree that that would be a problem.
If the Minister is able to assure me that the Government intend that the word “information” should be widely defined so that, for instance, if someone was to say, “I am convinced that my husband was unaware of the deemed consent law and would have opted out had he known; therefore, you should not take his organs”, this would count as valid information and prevent the deeming of consent. This would reassure many people with concerns about the deeming of consent.
In most cases, there would be no means of proving in a court of law that the husband was unaware, so if that is what the wife says, it should be accepted. If people knew this, they would feel less threatened—that the state was trying to supplant them and their family, and other people and their families—and be less likely to opt out. This approach is entirely consistent with what the Government propose with respect to faith communities. If a Muslim wants to be a donor and carries one of the proposed new faith-specific organ donor cards, it means that they want to donate, but subject to the views of their religion being respected. I simply seek reassurance that people will be assured that the same respect will be afforded to their families and living representatives.
In asking this question, I should stress that I am not asking the Minister to say that no doctor would ever take organs if the family was unhappy. I am of course aware that most doctors would be reluctant to do such a thing. I am asking specifically what the Government intend that the law should mean. I want to establish whether the Government intend that a doctor should, from a purely legal perspective, be able to transplant organs even if the family members provide information, based on what they believe their relative would have wanted, which suggests that consent should not be deemed. If the Minister can confirm that the Government’s intention is that “information” should be widely defined—so that if someone were to say, “I am convinced my husband was unaware of the deemed consent law and would have opted out had he known”, this would count as valid information and prevent the deeming of consent—I will withdraw my amendment.
I turn now to Amendment 3, which places a statutory obligation on the Secretary of State to make people in England aware of how deemed consent works, including through an annual advertising campaign. Quite apart from making all existing adults aware, we must remember that every year, about 760,000 people turn 18 years of age in the UK, and all those in England will need to be written to. Then we must be aware of all the people coming into England each year from other jurisdictions. Crucially, the awareness-raising and advertising provision set out in my amendment is made in the existing Welsh legislation but is missing from the Bill. My motivation in moving the amendment is exactly the same as for Amendment 1: I want us to do everything we can to limit the number of people who opt out of donation as a result of the introduction of presumed consent, for all the reasons I have already set out.
The organs of the 182,519 people who have opted out in Wales in response to the deeming of consent are completely lost from the donor system. No one had opted out previously. If Wales loses this number in a context where there is statutory assurance about advertising, thereby making it more likely that a person whose consent has been deemed really has made a donation decision, how much greater will the risk be in England if we do not provide that same assurance? We must do everything possible to limit the number who opt out in England. In order to have a credible system of deemed consent, one has to put in place the requisite infrastructure to make it reasonable to claim that anyone who has signed neither the opt-out nor the opt-in register has made a deliberate, conscious decision to become an organ donor by having their consent deemed.
This depends, critically, on a huge advertising campaign so that it is credible to suggest that the entire adult population will have seen the relevant adverts and taken on board that if they want to donate, they can give effect to that decision by doing nothing, and that if they do not want to donate they must sign the opt-out register. If one does not have a very large advertising campaign, members of the public will work out that the chances are that a significant number of individuals whose consent will be deemed will not actually make a conscious donation decision; they will have simply done nothing, not appreciating that in this context, the absence of an action is considered a decision and authorisation for organ donation. If members of the public who recognise that the law has changed suspect that the state is underinvesting in advertising and therefore cannot credibly suggest that everyone whose consent has been deemed will have decided to have it deemed, they are much more likely to feel that the state is trying to take organs without proper consent. In this context, it is more likely that people will feel like opting out. It is thus critical to reassure the public that there will be a major and ongoing advertising campaign.
On the basis of the current Bill, we are rather vulnerable on this point. In the first instance, unlike the Welsh legislation, it provides no assurance that there will be proper and ongoing investment in advertising by making it a statutory obligation which cannot be changed without an Act of Parliament. If, however, the Government accept my amendment, they will give the people of England the same assurance that has been given to the people of Wales, and that there will be a serious and ongoing advertising campaign about how presumed consent works. This will give credibility to the claim that everyone who has done nothing in respect of organ donation has made a deliberate and conscious donation decision. As a consequence, there would be less scope for people to feel offended and opt out.
In the second instance, this weakness is reflected in the fact that the advertising budget is £18 million over four years. I have two major concerns about this. First, when one allows for the fact that the adult population of England in 2017 was recorded as 43,752,473, that works out at just 41p per person over four years, or 10p per person per year. I am not convinced that this tiny sum treats people’s consent with appropriate respect. It does not allow us to conclude that everyone who has not opted out has made a deliberate and conscious decision to opt in. Others are bound to think the same, and this risks significant withdrawal from donation, because there is a greater chance that people will think the system unfair and want no part of it. In this context, one option would be significantly to increase the proposed level of advertising, making people aware that if they do not opt out, they will be treated as if they had consented to donate. To secure a credible arrangement, however, would require a lot more money over a sustained period. In contemplating that, we have to ask whether it is worth it.
Baroness Barran (Con)
I wonder whether the noble Lord could be mindful of the time taken for his remarks.
Lord McColl of Dulwich
What is the limit? My apologies.
I return to my basic question and ask whether the Minister can confirm—[Interruption.] I am speaking to two amendments; 15 minutes each makes 30 minutes. Can the Minister confirm that the Government intend to define widely the word “information” in proposed new subsection (6B), introduced by Clause 1(4), so that if someone said, “I am convinced that my husband was unaware of the deemed consent law and would have opted out had he known, so you should not take the organs”, this would be regarded as meeting the definition of “information” in the Bill? If the answer is yes, I will happily withdraw the amendment and I will not die in a ditch for my second amendment, but it is entirely reasonable to suggest that the people of England deserve the same statutory assurances on advertising as the people of Wales. I beg to move.
Lord Carlile of Berriew (CB)
My Lords, it is always a pleasure to follow the noble Lord, Lord McColl. He has great distinction as a surgeon; I recognise, as I am sure other noble Lords do, both that distinction and the great care he took, perhaps with a little liberality with the rules of the House, in presenting his arguments.
I will be brief. I think that I am one of six former Welsh Members of another place in the House today. At least some of us, perhaps most of those present, were reasonably or very enthusiastic supporters of devolution to Wales. One reason why the law on organ donation has changed in Wales is because devolution has allowed for a much shallower pyramid in the Welsh legislative process. In December 2015, the Welsh Government and the Welsh Assembly changed the system to one of presumed consent. It has worked very well. For me, as a Welsh-born former MP for Wales, it is a matter of great pride to be able to say to your Lordships’ House, on this occasion at least, “Look up to what has happened in Wales”. Indeed, the noble Baroness, Lady Randerson, as a former Welsh Minister, carries some credit for what occurred there.
I offer a few short propositions. First, there is no evidence of sound ethical principles being undermined as a result of the new Welsh legislation. Believe it or not, medical ethics in Wales are at least as good as in England, and patient satisfaction levels are at least as high, if not higher. Secondly, there is clear evidence of a better understanding of organ donation issues among families in Wales. The figures speak for themselves: on 16 November 2018, the Welsh Government announced that the rate of family consent in Wales is now at its highest ever—80.5%. That compares with 66.2% in England, 63.6% in Scotland and 66.7% in Northern Ireland. I suggest that these figures show that understanding of the new organ donation arrangements in Wales among Welsh families and the Welsh public is very high. There is no evidence of any irresponsibility, either legislatively or in the health service, in ensuring that organs are available in Wales.
Finally, I have no particular objection to the ambition of the noble Lord, Lord McColl, that public information levels about the new process of deemed consent for organ donation should be the highest possible. That has happened in Wales, which is why families there understand these issues so much better, as borne out by the figures I just gave. Indeed, can the Minister—who is a she, not a he, by the way—confirm the Government’s ambition for public information levels to be at least as high in England and wherever else the Act will apply, which is a matter for later discussion, as in Wales? The Government would be crazy not to undertake a publicity campaign to explain properly something quite fundamental that needs to be explained to the public. Can she also confirm that patients in other parts of the United Kingdom to which this excellent Bill applies will not be at any disadvantage?
Baroness Randerson (LD)
My Lords, I want to make it clear that I oppose firmly Amendment 1. I believe that it fatally undermines the concept of deemed consent and ignores the processes that will be put in place if and when the Bill becomes law.
In some circumstances when people die, medical practitioners have a short window of opportunity to deal with organ donation, and it is simply impossible to get permission from the people who were near and dear to the deceased. Very sadly, some people also die having no one in that category. As it is written, the amendment undermines the principle. If the intention is to write into law that, where possible, family and friends must be consulted about the wishes of the deceased and their own wishes, that would be a different matter. However, as I read it, that is not how Amendment 1 would work.
The noble Lord, Lord Carlile, has been a brief but powerful advocate of the Welsh system. I want to say one or two other things about it. Because we were pioneers on this within the UK, it was very much a matter of taking a belt and braces approach—take no risks. There were years—and I mean years—of public consultation on this issue and then years were spent preparing the resources to make sure that, when it was implemented, it would be done properly. That is why it took over five years from inception to the time when the system was put into place.
The Government need to publicise and inform. I support the noble Lord’s intention in Amendment 3, and I hope the Minister can confirm that the Government would consider incorporating this provision into the Bill—perhaps not in its current wording but in its intention. There would need to be a wide and repeated publicity campaign for the reasons that the noble Lord outlined.
The process of deemed consent will not reduce the pool of donors. Look around the world for the evidence. The top 10 countries in the world for deceased donors per million of population are Spain, Portugal, Belgium, Croatia, the USA, Italy, France, the Czech Republic, Austria and Belarus. Only the USA has an opt-in system; nine out of the 10 do not—there is the evidence. In those countries, in so far as I have been able to look back historically, there has been a great increase in the number of donors following the introduction of an opt-out system. I will not repeat the statistics that the noble Lord, Lord Carlile, has given the House, but the history in Wales is clear. Since 2015, the numbers have increased considerably year on year. Although we in Wales had been lagging behind the rest of the UK in our donor numbers, we are now well ahead.
The rate in Wales of those who choose to opt out is currently 6%. When we held our public consultation, we believed that the rate could be as high as 19%. It is a triumph of the publicity that people have understood it, but an important thread in that publicity was the fact that people were encouraged again and again to talk to their families and make their wishes known, so that due sensitivity could be paid to the wishes of families.
The British Heart Foundation, Kidney Care UK, the BMA and dozens of other organisations deal with this situation day in and day out. They all support this Bill, and I urge noble Lords to do so as well in due course.
Lord O’Shaughnessy (Con)
My Lords, I want to make a brief contribution because I was in my noble friend’s position at the Second Reading of this Bill. It is important to reflect on the theme of the amendments tabled by my noble friend Lord McColl: they are about trust. He is of course absolutely right that in the course of any changes we make in the future and whatever system we create, we must maintain the trust of British citizens, patients and their families. I agree completely with him in that intention. That is why, as the noble Baroness, Lady Randerson, has just said, I support the intention of having a good campaign, although I do not think that it is the sort of thing which ought to be put into legislation, for the obvious reasons. Indeed, as the noble Lord, Lord Carlile, pointed out, it would be barmy for any Government to undertake this kind of policy change and not pursue that, because to do so would be to fatally undermine the trust that already exists. At the moment, we have a very strong system in England which we intend will only get better.
I am sure my noble friend the Minister will confirm that it has always been our intention to provide a thoroughgoing, lengthy and extensive campaign for every new generation coming through in support of the idea of deemed consent. This policy has been supported by successive Prime Ministers: Gordon Brown supported it, David Cameron had an interest in it and Theresa May has made it a personal commitment. Given the benefits that such an approach yields, as has been demonstrated in Wales and elsewhere, it is inconceivable that any Government would not put the necessary resources into it. Indeed, we have an excellent record on public health campaigns and information campaigns in this country. The intention behind Amendment 3 is right, although I do not think that it is appropriate to put it into primary legislation.
Baroness Jolly (LD)
My Lords, I will be brief, not least because I have a cold and I am not sure how long I can keep going. First, I apologise to the Committee that I was unable to speak on Second Reading.
We know that up to 80% of the public would consent to this selfless act, but unfortunately less than half that number take the necessary steps to do so. My party approved this opt-out campaign in 2002 and it has been put in place in Wales.
What plans does the Minister anticipate being put in place to ensure that this campaign is carried out at least annually? The noble Lord, Lord McColl, was somewhat dubious about the small amount of money that was going to be put into an advertising campaign. All sorts of things might happen, but to do advertising campaigns online using Facebook and things like that will reduce the price hugely, although it is absolutely important that at least one shot—a letter or leaflet—should go to each household. Can the Minister give us some idea of the type of campaign that might be run, but also whose responsibility it would be? Would it be the department or NHS England? The noble Lord, Lord O’Shaughnessy, suggested that it might be Public Health England. I do not know.
As a House, we need to be aware that not everybody is in favour of this idea. One of my colleagues made it absolutely clear to me yesterday that he believes the decision should be his and his alone and that these proposals are illiberal. If the decision is to be made, he believes that it is he who should make it and not the state. Those were his words, not mine. He said the state should not have control of his body after he had died. Would it be possible to carry an opt-out card, which might be a sensible way around this?
My personal view is that having an organ donated is the best gift that those in desperate need of one will ever receive—not just the patient but their family, friends and those who care. We have seen the success of the opt-out system in Wales, so we on these Benches believe it is high time we followed suit in England to prevent people dying for lack of an organ.
Lord Lansley (Con)
My Lords, I think I am with the noble Lord, Lord Hunt, and others in having been sceptical of an opt-out system, not least when we came to discuss it at some length—I see the noble Lord, Lord Reid, there—during the passage of the Human Tissue Act back in 2003 or thereabouts. We looked at it at some length. That prompted the pursuit by subsequent Governments, including the coalition Government in which I served, of every available opportunity to try to increase donor rates, not least by improving the system of transplant co-ordination and the supply of specialist transplant nurses.
My first point, to which I hope my noble friend the Minister will respond positively, is that I do not share the view that under this Bill resources for information and for the transplant system—in particular for an increase in specialist transplant nursing support—are in any sense in competition. We need to do both, and I hope the Minister will be able to confirm that we will seek wherever possible to have exactly that support through transplant nurses. It is really important that we do. I think the noble Baroness, Lady Randerson, was referring to that when she referred to Spain. At the time, we looked in some detail at the Spanish example. Spain said to us that probably the bigger element in its success was not that it was an opt-out system but that it had really effective transplant co-ordination and strong support for families through trained nursing and support staff. That is the most important thing.
However—not to rerun Second Reading, to which I contributed—we have an ethical obligation to secure the maximum availability of organs for those waiting for them, some of whom, sadly, continue not to get access to organs and to die while waiting. We have an ethical conflict, because it is right to say that the state does not own our bodies. We have a right to determine what happens. My noble friend Lord O’Shaughnessy was absolutely correct in pointing out that the Bill offers an opportunity for those who wish to control what happens to their organs and bodies after death to make that explicit.
This brings me to my final point, which is to further thank my noble friend Lord McColl for raising these issues. If we are to go down this path, it is absolutely essential that the families of everyone who may be—sadly after death—a donor must be aware that they had an opportunity to consider this. Whether they took any action is a matter for them. We must be confident that the information, not only in the first instance but subsequently, is such that nobody could reasonably be expected not to have been presented with this as an issue they should consider. The noble Lord, Lord Anderson, asked what happens if the family disagree. They may, but the law is then very clear that the transplant co-ordinator, nurse or whoever must take the decision must do so seeking to determine what the loved one who has died would have thought. The evidence is not: what do you think, as the person in a qualifying relationship? It is: what can you say about what the view would have been of the person who has died and whose organs are potentially to be donated? That is the issue and the judgment that has to be made, and of course that is where the ethical issue really bites. It is not what we might think about our loved ones, but what we know about what they themselves thought about what should happen to their own organs. For those reasons, my noble friend’s amendments—I know he will not press them, and I think that is absolutely right—have very helpfully given an opportunity for the Minister to give us reassurance on both those points.
Baroness Thornton (Lab)
My Lords, I shall say just a few words. The noble Baroness, Lady Randerson, and the noble Lords, Lord Carlile, Lord O’Shaughnessy and Lord Lansley, have made the arguments extremely well, so there is no need to repeat them. I just make the practical point that if we want this on the statute book it has to be unamended. We can have these discussions— they are helpful—but that is the truth of the matter. We will all have received a briefing yesterday from Kidney Care UK, which stated that three people die every day waiting for a kidney. That is what we need to bear in mind.
Baroness Manzoor (Con)
I was expecting the noble Baroness, Lady Thornton, to talk for a little longer, so I thank her very much.
I thank my noble friend Lord McColl for initiating this discussion on the role of the deceased’s loved ones under the proposed new system. This is an important issue that has rightly been the focus of much of the debate in the other place and here. My noble friends Lord McColl and Lord O’Shaughnessy rightly stress the issue of trust. As both my honourable friend the Member for Thurrock and the noble Lord, Lord O’Shaughnessy, have confirmed on a number of occasions, the family will remain at the heart of the new arrangements, as now. I believe this reassurance has also been given in correspondence to my noble friend and has been confirmed by NHS Blood and Transplant’s medical director and national clinical lead for organ donation. I am happy to give further clarification on this point.
The legislation sets the framework for consent to organ donation and reflects what we already know—that most people support donation and agree that the decision of the potential donor should be paramount. We have, however, always said that, as now, organs and tissues will not be taken without full consultation with persons in a qualifying relationship—that is, the deceased’s close family and friends. There will always be a personal discussion between the specialist nurses for organ donation and the family. This is NHS Blood and Transplant’s current policy and will not change under the new system.
In addition to this policy, the Bill as drafted allows for a person in a qualifying relationship to the deceased to provide information about the deceased’s wishes on donation of their organs and tissues. This is an important safeguard, to find out what the deceased would have wanted and the best way forward. I remind the House that healthcare professionals have a duty of care not only to the patient but to the family. Specialist nurses for organ donations are highly trained professionals from an intensive care or emergency medicine nursing background. When nurses join NHS Blood and Transplant, they initially receive extensive training over a six-month period. This covers supporting families to make end-of-life care decisions, including on organ donation. A key focus of the training is to enhance their skills in supporting acutely bereaved and grieving families.
Lord Hughes of Woodside (Lab)
Can the Minister confirm that the carrying of a donor card short-circuits the long process of finding relatives and so on, or is that simply a figment of my imagination?
Baroness Manzoor
My Lords, I will come on to donor cards. I hope that with the enactment of the Bill more people will be able to take proactive action to record their decision on organ and tissue donation and discuss it with their family.
It is fully recognised by the Government that the new system must be well publicised for the changes to have the greatest effect. As part of developing the code of practice, the Human Tissue Authority will propose what information the specialist nurse should consider. The principle, however, will be that such information represents the wishes of the deceased rather than those of the family.
Without wanting to prejudge discussions with the stakeholders in the planned public consultation, we are aware that organ donation in some cases may be against someone’s culture, faith or belief, as my noble friend Lord McColl pointed out. It is for this reason that I confirm again that the Government will launch a 12-month communications campaign after the Bill receives Royal Assent. We are working with NHS Blood and Transplant on plans to reach out to as many people as possible. Plans are already in train to write to each household in England; to use different advertising channels, including TV, radio and social media; to promote the campaign in health settings; and, through partners, to engage the media in work to ensure that we reach hard-to-engage groups so that as many people as possible in England are aware of the changes.
My noble friend also raised the question of foreign students. The regulator will work with the Universities and Colleges Admissions Service to raise awareness with them.
We are also keen to work and align our message with the many charities that are already doing great work to promote organ and tissue donation. Key stakeholders are now part of the NHS Blood and Transplant communications advisory group and they are considering how best to do this.
Baroness Randerson
The Minister has given a list of organisations that she will be working with but I have not heard the word “schools”. The noble Lord made a good point about young people coming up to the age of 18 needing to be fully informed. Schools are an effective way of passing on information about basic rights in our society.
Baroness Manzoor
I agree. Schools and universities will be included. It is important that the message is carried in those settings and institutions. I have already said that NHSBT will work closely with universities and other organisations to ensure that key messages are available.
On donor cards and short-circuiting the family, there is no name on the card but it is a good starting point to knowing the wishes of the deceased. Efforts will be made to track down the family to determine lifestyle history.
Lord Berkeley (Lab)
I may have misheard, but I do not think the Minister answered my noble friend’s question about donor cards. If she does not have an answer, will she write to him?
Baroness Manzoor
I thought I had, but if my answer was not clear enough, I will of course write to the noble Lord.
A campaign will take place before the new system is brought into force. The Government fully understand that changing the culture around organ donation requires continuous engagement with the public and that the communications campaign alone will not achieve this.
My noble friend Lord McColl raised the important issue of a zealous doctor taking the organs of one’s loved one without consulting the family. I reassure him that it is unlawful to remove organs and tissues for transplantation purposes without appropriate consent as defined in the legislation. The Bill sets out the system of deemed consent, and families will play an important role in establishing the views of the deceased. If organs and tissues are removed without proper consent, an offence is committed. This is clearly set out in the Human Tissue Act 2004.
The noble Baroness, Lady Jolly, asked about opting in and opting out. I understand the point she made about having an opt-out card, and my noble friend also made that suggestion. People do not usually carry the card at the time of donation. That is why it is vital to record a decision on the organ registry, which nurses always check. It will show what the deceased wished.
As set out by my noble friend Lord O’Shaughnessy at the Bill’s Second Reading, the Secretary of State will continue to uphold his duty to promote organ and tissue donation, as set out in the National Health Service Act 2006. This duty has been delegated to NHS Blood and Transplant which, after the initial national communications campaign, will promote deemed consent as part of its ongoing awareness-raising activity each year. The Government are planning to spend around £18 million on communicating until 2021-22 and to fund follow-up campaigns after that. The campaigns and the relevant information made available to the public will cover all aspects of how the new arrangements will work, including the role of the family.
My noble friends Lord McColl and Lord Lansley and the noble Baroness, Lady Randerson, spoke about funding the system. We will make sure that the system is funded as it should be. I assure noble Lords that we are working closely with NHS Blood and Transplant on its operational costs, which we will fund.
My noble friend Lord McColl mentioned that specialist nurses do not attend donors in 10% of cases and do not speak to the family. Specialist nurses for organ donation attend to speak to the family whenever they are informed of a potential donor. In a very small number of cases the nurses are not contacted, but this is often because the family has already raised the issue with their doctor and stated that they do not want donation to occur and do not wish to speak to a specialist nurse. NHS Blood and Transplant is working to achieve 100% referral and family approach.
I thank the noble Lord, Lord Carlile, for his support. Our ambition is to reach 80% of the population of England, so we are very ambitious. It is important that we do this. As I said, the Government intend to spend around £18 million on communications in 2020-21.
I hope that I have given noble Lords enough reassurance. If even one life is saved as a result of this change in culture—and we are looking for a change in culture—it must surely be worth it. I hope that, with the further assurances that I have given my noble friend and have categorically put on record, he will be able to withdraw his amendment.
Lord Hunt of Kings Heath (Lab)
I am very grateful to the Minister and, in particular, the noble Lord, Lord McColl, for raising these important issues. He asked for reassurance, and I hope that in a moment he will be able to say that he has received it.
I shall make four quick points. First, I agree with the noble Lord that in the relationship between the patient and the doctor, trust is critical. He mentioned Alder Hey. I was a Minister who had to deal with the Alder Hey situation. It was very different. There was a rogue pathologist, unsupervised by the NHS or the University of Liverpool. Many parents affected had the tragedy of three times having to bury parts of their child’s body. That situation has left an indelible mark on anyone who had anything to do with it. But what happened at Alder Hey is very different from transplant services. People in those services are very responsible and operate under a code of practice and the law. While the noble Lord is right to raise that situation—and some of the families who were affected are watching the debate in your Lordships’ House today—there is a difference.
Secondly, the Welsh experience is instructive in its success in increasing the rate of donation. As the noble Lord, Lord O’Shaughnessy, said, it allows people to opt out, but the number of those who do so is much smaller than the noble Baroness, Lady Randerson, and her colleagues in Wales thought it would be. That shows that the system is working.
Thirdly, at the heart of the Bill we are encouraging a change in culture, so that we as individuals talk to our families about our intentions. This is why having the card and signing the register are so important, as they are a clear indication to our families that we wish to donate our organs. Nothing in the Bill will move away from the important discussion with the family and from families being listened to in the way that the Minister said.
Finally, on the education campaign, I do not wish away £18 million. It is a good sum to start with, but we will have to see how it goes. If it is apparent that we need more campaigning, I will be the first to knock on the Government’s door. We should also remember what the noble Lord, Lord Lansley, said: it is not just the campaign. We need to make sure that our transplant service will be able to meet the increase in donations that we expect to see. That means, first, that we make sure that we have enough of the crucial specialist nurses, who do a fantastic job. We also need to make sure that the transplant service will be able to respond to what I hope will be an increase in the number of donations.
I hope that the noble Lord feels he has received the reassurance he rightly asked for.
Lord McColl of Dulwich
My Lords, I thank all noble Lords who have taken part in this debate. I have been very reassured by the statements that have been made. I was particularly struck by my noble friend Lord Lansley emphasising the role of transport co-ordination nurses. They are the key people, and I believe that the way to get more donations is to have more of these nurses. That would be a really good investment—an investment which we know works. I am very keen on evidence-based medicine and policies, and they are the key. The Minister mentioned, as I did, that 10% of cases are not attended by these nurses, and I think she said that that was due to the fact that people did not want that. I hope that that is the only reason, but I have a suspicion that it is because we do not have enough of them. Perhaps that could be looked into. We need more of them, for certain.
I am very reassured by all the statements that have been made and I beg leave to withdraw the amendment.
Lord McColl of Dulwich
“Five year review of the effectiveness of deemed consent
(1) The Secretary of State must at least once in every five year period beginning with the day on which this Act is passed lay before Parliament a report which includes analysis and evidence on whether the introduction of deemed consent under section 3 of the Human Tissue Act 2004 has been effective in increasing the number of organ and tissue donations.(2) The report under subsection (1) must take into account other developments that may have affected the number of organ and tissue donations.”
Lord McColl of Dulwich
My Lords, Amendment 2 is inspired by Section 2(3) of the Welsh legislation. It requires the Secretary of State at least once every five years to lay before Parliament a report that includes analysis and evidence of whether the introduction of deemed consent under Section 3 of the Human Tissue Act 2004 has been effective in increasing the number of organ and tissue donations.
In the context of knowing, first, that the Organ Donation Taskforce expressed real concerns in its 2008 investigation about presuming consent and, secondly, that, as we have mentioned before, over 180,000 people have opted out of donation in Wales, all having originally been potential donors, it is only right that this kind of commitment to review should be set out in legislation. If the people of Wales deserve the reassurance and protection of a robust statutory assessment then the people of England also deserve it.
My Amendment 2 also requires a review not just of whether the level of organ donation has increased but of whether other factors should be taken into account. When there is talk of any proposed policy to increase donation, we often hear words to the effect of, “Of course, doing X is not the whole answer. It is part of the solution”. That sounds very reasonable but those of us committed to evidence-based medicine need to ensure that it does not become the basis for failing to assess the distinctive contribution of the policy in question to increasing donation rates.
The point has been made that the Welsh Government invested a huge amount of political capital in deemed consent. They wanted to do something distinctive and for other parts of the UK to follow them, and they could not allow it to fail. In this context, although there has been a huge amount of publicity around presumed consent, it is very interesting that in the same timeframe there has, I understand, been increased investment in critical care beds, specialist nurses in organ donation and advertising promoting donation, as opposed to presumed consent.
We know that if you increase investment in critical care bed capacity, it increases donation. We know that if you increase investment in specialist nurses in organ donation, that increases donation. We know that increased advertising encouraging donation increases donation. We also know that presuming consent always reduces your total pool of potential donors because some people will opt out. As I said earlier, in Wales that number is 182,519 and it has steadily increased since the introduction of deemed consent.
In that context, it is entirely possible that simultaneously we are doing some things that will increase donation and others that will reduce it. It is also entirely possible that if you have three initiatives that push donation in the right direction and one in the wrong direction, the net effect will still be in the right direction. It is entirely possible too that if, for political reasons, you choose to highlight in publicity one of the four options, people might conclude that the highlighted option is the reason for success, when actually quite the opposite applies.
In assessing the efficacy of deemed consent, it will be really important to highlight the other steps that we take alongside presumed consent so that there is an honest attempt to find out whether the downside of deemed consent—the withdrawal of potential donors—is offset by positive changes resulting from deeming consent or whether it is offset only by other, less high- profile initiatives that have nothing to do with deeming consent.
In moving this amendment, I particularly congratulate the Welsh Government on the hard-hitting television campaign they introduced for organ donation in the last two years. What is really striking is that it make no reference to deemed consent. It is basically designed to encourage families to talk about organ donation so that family members are familiar with each other’s donation wishes. It is a great advert that could be run in an informed consent jurisdiction such as England. Although the advert has nothing to do with presumed consent, one would expect it to have made a very positive contribution to donation in Wales in the period since presumed consent was introduced.
In that context, I ask the Minister to acknowledge that there is a real challenge here and to commit to putting in place a really robust assessment process that seeks, with energy and determination, to isolate the distinctive contribution of deemed consent from the contribution of other, less controversial mechanisms for increasing donation, such as more critical care beds, more specialist nurses in organ donation, more adverts encouraging donation, et cetera. If it transpires in five years’ time that the policy lever for maximising donation is not presumed consent, I hope that we will be ready both to move on from it and to focus the resources thereby released on organ donation policies for which there is a robust evidence base.
Lord Hughes of Woodside
Can the noble Lord say precisely whether there is any value nowadays in carrying a donor card or whether that is now obsolete?
Lord McColl of Dulwich
We have always encouraged the carrying of donor cards. We used to keep a whole stack of them in our pockets and hand them out to the patients at Guy’s. As for the evidence, I am not sure, but they cannot do any harm and I would certainly encourage people to carry them.
Finally, and keeping in mind the need for review at a more general level, I ask the Minister in passing whether consideration has been given to extending the proposal that Muslims and Jews should be able to carry donation cards that say that they wish to donate but only subject to their faith being respected. On the basis of the views I have encountered, I think that this would provide reassurance to members of other faith communities as well. I beg to move.
Baroness Manzoor
My Lords, I thank my noble friend for introducing this amendment, which relates to a very important issue. Like him, I believe in evidence-based medicine.
The Government have maintained, and have been clear, that a change in the law by itself is unlikely to lead to an increase in the number of organs and tissues available for donation. However, it is an important measure in addressing the tragic death rate due to a lack of organs and tissues available for donation, and we hope that this will be a significant step towards changing the culture regarding organ and tissue donation in England, as I said previously.
I point out to the Committee that NHS Blood and Transplant already has a legal duty to report to the Secretary of State on all its activity and is a world leader in collecting and analysing data on organ donation, retrieval and transplantation. The ongoing data collection encompasses data regarding the registrations on the organ donor register, the number of potential and actual donors, organ retrieval and organ transplantation activity. This data is published in a variety of formats, placed on its website and set out annually in a comprehensive report.
Lord Hunt of Kings Heath
My Lords, I have nothing to add to what the Minister has said, save that robust assessment will be important not only after one year but on a number of occasions. It will be very important to pick up the issue, raised by the noble Lord, Lord McColl, of whether transplant services are keeping pace with the hoped-for increase in donations.
Lord McColl of Dulwich
My Lords, I would like to thank everyone who has taken part in this debate. I am very reassured indeed by what has been said. It might perhaps be appropriate to repeat something that I said at Second Reading, in view of all the commotion and anger about Europe. When I was transplanting kidneys, the French kidneys were always the best. I say that because, when I connected the artery and the vein and took off the clamps, the urethra would immediately start peeing on the table, which was amazing. None of the other kidneys did this. I said, “What is it about these French kidneys?” The reply was, “Oh, it’s the wine”. I beg leave to withdraw the amendment.
Lord Morrow
“(1) Sections 1, 2 and 3 extend to England and Wales.(1A) Sections 2(2), 2(3) and 3 extend also to Northern Ireland.”
Lord Morrow (DUP)
My Lords, I will be very brief. I accept that this Bill is primarily about what happens in England, but it includes references to Northern Ireland in Clauses 2 and 3. It is the latter clause that my amendment explores and to which my interest turns.
To give some background to my comments, I should first say that there were discussions about introducing deemed consent in Northern Ireland in 2015-16 but considerable concerns were raised and the Bill did not become law. The Department of Health continues to take its responsibilities seriously to promote organ donation in Northern Ireland, has recently consulted on this topic and, in December, announced a £250,000 programme of co-ordinated activities to increase organ donors across Northern Ireland.
Secondly, health matters continue to be delegated to the Northern Ireland Assembly, which is acknowledged by paragraph 44 of the Explanatory Memorandum accompanying the Bill and paragraph 28(c) in the Government’s memorandum concerning the delegated powers in the Bill. Thirdly, I want to thank the Minister for taking the time this week to discuss my amendment and his officials for being in touch with me regarding it. What they sent to me and what they said was quite reassuring. However, I want to put my comments to the Minister today. To be quite frank, getting them on the record is what I am about.
I return to my concerns about Clause 3 and the purpose of Amendment 4: Clause 3(1) says that the Bill extends to Northern Ireland, which I would expect to mean that all three clauses apply to Northern Ireland. However, the title of Clause 1 is “‘Appropriate consent’ to adult transplantation activities: England”. There thus appears to be something of a contradiction in the Bill, which my amendment seeks to resolve. I recognise that Section 3 of the Human Tissue Act 2004 extends to Northern Ireland, but I want to be very clear that the proposed changes to that section, set out in Clause 1 of this Bill, do not. For the sake of complete clarity, I am proposing an amendment that excludes Clause 1 being extended to Northern Ireland and hope that the noble Lord, Lord Hunt of Kings Heath, who is the sponsor of the Bill in this House, and the Minister, will put on the record that there is no intention of Westminster bringing in deemed consent for organ donation in Northern Ireland.
Baroness Manzoor
My Lords, I thank the noble Lord, Lord Morrow, for raising the issue of territorial extent and its application in this Bill. I clarify that that the Bill does not change the rules of consent in Northern Ireland and introduces deemed consent only in England. The reason Northern Ireland is included in the extent is because the Bill amends an existing piece of legislation, the Human Tissue Act 2004, which extends to England, Wales and Northern Ireland. While the Bill has been drafted to have a matching extent to that Act, which is the recommended approach when an existing Act is amended, we are changing the law to introduce deemed consent in England only. Deemed consent will not apply to Northern Ireland.
On the second part of the noble Lord’s amendment, the Bill as drafted ensures that organs removed in England under deemed consent can still be stored and used in Northern Ireland as now, even if Northern Ireland does not have deemed consent. This is why Northern Ireland is included in Clause 2(2) and (3). However, for such a provision to have effect in Northern Ireland, there will be a need for a legislative consent Motion from Northern Ireland.
I hope this reassures the noble Lord that we have not undermined policy in Northern Ireland in any way, and reassures the Committee that this amendment is not necessary. I hope the noble Lord will withdraw his amendment.
Lord Hunt of Kings Heath
My Lords, the noble Lord has asked me to confirm the view of the Minister, and I so do.
Lord Morrow
My Lords, I thank the Minister and the noble Lord, Lord Hunt. To put it very succinctly, I am reassured. I beg leave to withdraw the amendment.
Organ Donation (Deemed Consent) Bill
Tuesday 26th February 2019
(5 years, 1 month ago)
Lords ChamberRead Full debate Organ Donation (Deemed Consent) Act 2019 Read Hansard Text Amendment Paper: HL Bill 141-I Marshalled list for Committee (PDF) - (30 Jan 2019)
Lord Hunt of Kings Heath (Lab)
My Lords, I should like briefly to express my thanks to the Prime Minister and my right honourable friend the leader of the Opposition, and indeed the leaders of many of the other parties, for their very strong support for this Bill.
Huge credit is owed to my honourable friends Geoffrey Robinson and Dan Jarvis and a cross-group of MPs who helped to see the Bill through the other place. I mention in particular the pioneering work of the late and very much missed Paul Flynn, who laid the early foundations and whose last speech in the other place was in support of the Bill.
In this House, the Minister and her predecessor, the noble Lord, Lord O’Shaughnessy, deserve great credit for their support, and I thank many noble Lords from all round the House, including my noble friend Lady Thornton, for their stalwart support in taking the Bill through. I have benefited from the valuable advice of Marina Pappa in the Bill team in the Minister’s department, the team led by John Forsythe at NHS Blood and Transplant, and Paul Millar in Geoffrey Robinson’s office.
The long and enthusiastic support of Mirror Group Newspapers has also been invaluable, as has that of charities such as Kidney Care UK and the British Heart Foundation, which work tirelessly every day to support patients and their families.
This Bill has been referred to often as Max and Keira’s Bill in honour of a recipient, 10 year-old Max Johnson, who was recognised by the Prime Minister for his immense bravery while waiting for a heart transplant, and the donor, Keira Ball, who tragically died in a road accident. I pay tribute to both of them.
I am convinced that the passing of this Bill will lead to many more organ donations and lives saved while retaining the involvement of the family in what will remain a remarkably altruistic act of giving. I beg to move.
Royal Assent
Friday 15th March 2019
(5 years, 1 month ago)
Lords ChamberRead Full debate Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 5 March 2019 - (5 Mar 2019)